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Hi! My name is Robyn and I have been suffering what looks to be autoimmune symptoms for getting on to 3 years now.

I don't have a diagnosis yet but I am seeing a rheumatologist in the hopes of eventually getting one!

My symptoms are as follows:-

chronic anemia - has been ongoing for 8 or so years now
Joint pain in hands, feet, wrists and ankles and at times elbows and knees
recurrent fevers often above 38 degrees celcius (I am an aussie)
dry eyes and blurry vision at times
dry mouth
mouth ulcers
sores/ulcers in nostrils
pain under left rib
heart palpitations at times
excessive sweating
night sweats
insomnia
depression
foggy & slow thinking
poor memory
inability to concentrate
weak muscles
pain in different areas of body (moves)
pain under back ribs after exhertion
exhaustion, worsening over course of week till I flake out by the weekend, sometimes sooner. by the weekend I just need to get lots and lots of rest to be able to face the following week of work. :(
Very pale sickly looking skin
sores all over arms, legs and scalp that get worse and inflamed during a flare
swollen lymph nodes under jaw and at base of neck and at times other areas as well
fluid retention and swelling around face and other areas of body (both on and off prednisone)
swelling around feet and ankles (both on and off prednisone)
I get a flushed/burnt looking rash over bridge of nose and cheeks
prone to rashes for unknown reasons!
itchy skin especially prior to a flair.

My blood work has not shown anything other than inflamation. My ANA tests have always been negative.

Inititally I was diagnosed with Coeliac's Disease (when investigating the anemia) as I had damaged villi but never did have the antibodies associated with Coeliacs. After 14mths on a strict gluten free diet I was not getting better so I did a gluten challenge with biopsies before and after and it showed that I was not Coeliac after all.

When I first saw my rheumatologist he thought it might be mixed connective tissue disease as he said I didn't fit neatly into any one box such as lupus or other Autoimmune disease. He had further blood tests done which again only showed inflamation, after which he said he thought there was definately something autoimmune going on but couldn't say what yet for the same reasons.

He said he could try me on prednisone but you could tell he wasn't keen on the idea, but I was at that point at wits end and needed to try SOMETHING! So he agreed to put me on it and I was on 25mg for a month after which I was to taper to 18.75 for a month and then to 12mg before I saw him again 3mths later.

I felt GREAT on the full dose of prednisone. Pretty much all of my symptoms were improving, I had energy was thinking clearly again felt much more like my glass half full self and was feeling like I could even go off my zoloft because I just felt NORMAL.

But when I tried to taper to 18.75 I had a major flare and wasn't coping too well. I emailed my rhematologist who said to decrease in smaller amounts. I was still having trouble even lowering by 2.5mg. I am currently taking 15mg a day each time I have tapered till now I have experienced swelling in my face and neck. One time I woke up gasping for breath in the middle of the night because of it and a couple of others I have had my breathing effected to the point I started snoring at night.

When I emailed my Rheumatologist and explained how well it was working he also prescribed plaquenil which I have been on for about 9wks now.

As my dose of prednisone lowers, all my symptoms are returning.. not quite as bad as it was before but not far of it now anymore. The rhematologist wants me off the prednisone by the next time I see him in about another 2.5mths. He thinks the risks are too great and I definately see his point as I am already overweight and the prednisone is making me gain weight like no tomorrow, my blood pressure is up (which it has never ever been befroe) and my cholesterol has gone up as well.

It is such a shame that I have go go off it as I felt so good on it.

The plaquenil doesn't seem to be working yet but he wants me on it until I see him next as he said we need to give it at least that long, which from my research I already knew. I am so hoping it works!

At my last visit he said that there were still no clear answers in my bloodwork, still just the inflamation. He said there is definately a systemic inflamatory disease going on but that was all he could tell me.

He said if the plaquenil didn't work he said we could try a stronger immune suppressant drug. he again didn't look too keen on the idea but if the plaquenil doesn't work I want to try it because I can't keep living like this. I have no life, I live to work and am too exhausted to do anything with the kids by the time I get home from work or on weekends.

Poor hubby is lumped with all the housework & cooking as well as his full time job as I just can't physically do any of it at the moment. We can't afford for me not to work and my job is at risk because my difficulties concentrating and difficulties remembering stuff is effecting my work quality.

UGH sorry, if you have made it this far, thanks for reading.. it seems I have written a book!

I have been doing lots of research on autoimmune diseases and it really seems like Lupus to me. It seems to be the one I have the most symptoms of. I just wish I could get some answers, but at least my rheumy is treating me in the meantime! I just wish I had something to tell everyone as to why I am so sick and not just lazy. They don't see how sick I am and it is frustrating trying to explain to friends and family. Thankfully my parents have been very supportive, as has my hubby, just everyone else seems to have difficulty understanding that I am not just lazy or exaggerating. I so hate feeling like a hyperchondriac because I know I am not one!

Anyway, thanks for listening, I would greatly appreciate your advice, thoughts and experiences on my symptoms and dealing with it all etc.
 

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Hello Robyn and welcome :)

Sometimes it is very hard for doctors to put a specific label on which auto-immune disease precisely is causing the problems. What is very good though is when the rheumatologist admits that yes, there is a problem and decides to treat it :)

Plaquenil does take some time to kick in (usually between 3-6 months) but it is an excellent drug and really the first line of defence in reducing freqeuncy and severity of flares as well as improving overall wellbeing. It is well worth staying on it even if you have to wait to see benefits. In any case, with these diseases there are no quick fixes and a correct treatment programme does take time to be set up. Many of us take a mix of different meds to get the maximum benefit from each of them with the minimum side effects.

As your doc said, if plaquenil is not sufficient there are other options which can be tried. You can also see if using non steroid anti-inflammtories might help in addition to plaquenil or any other med you might be taking (maybe you already take some).

bye for now,
Katharine
 

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Katharine;538866 said:
Hello Robyn and welcome :)

Sometimes it is very hard for doctors to put a specific label on which auto-immune disease precisely is causing the problems. What is very good though is when the rheumatologist admits that yes, there is a problem and decides to treat it :)

Plaquenil does take some time to kick in (usually between 3-6 months) but it is an excellent drug and really the first line of defence in reducing freqeuncy and severity of flares as well as improving overall wellbeing. It is well worth staying on it even if you have to wait to see benefits. In any case, with these diseases there are no quick fixes and a correct treatment programme does take time to be set up. Many of us take a mix of different meds to get the maximum benefit from each of them with the minimum side effects.

As your doc said, if plaquenil is not sufficient there are other options which can be tried. You can also see if using non steroid anti-inflammtories might help in addition to plaquenil or any other med you might be taking (maybe you already take some).

bye for now,
Katharine
Thanks for the info Katharine!

While I was on the full dose of prednisone I no longer needed the anti-inflammatories but I have started taking them again now because the joint pain is returning. It isn't as bad as it was yet, but it is certainly on it's way. I was taking voltaren but have since got a script from my gp for a perscription anti-inflammatory. I forget the name now, but it seems to be doing the trick for now, although they aren't usually suffient during a flare.

Do you have any idea what the success rates of plaquenil are? I am so worried it won't work! I guess I am just impatient to start feeling a little more normal again. :blush: After getting a taste of what normal is like again I so want to go back there! ;)
 

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Hi Robyn, I was diagnosed with mixed connective tissue disease last november after five months pain in joints, swollen fingers etc etc.... it took a flare that put me in hospital to be diagnosed. I then started on oral steroids as the injections I had had did nothing much. I had a flare in Dec which put me on 40mgs for a week, I am still tapering down from that. I think it is quite fast to come down from 15mgs in 2.5 mths when you are already feeling a lot worse.:( I am down to 6mgs (taken nearly 3 mths ) but really struggling to get to 5 and I know it gets harder dipping under that, so not sure how it will go. I have been told I may have to stay on a 'background' dose of prednisolone to 'hold' my symptoms and if that helps my quality of life with not too many side effects I would personally be happy with that. Please let your rheumy know that you are having problems with the returning of the pain etc, they will assume all is well if you don't contact them. Sometimes we soldier on and do what we are told when we should listen and trust our bodies. :) I also started plaquenil in Dec and think it is starting to kick in a bit now, it is worth persevering with.... I wish you all the best and get in contact with your rheumy... nag nag nag
Claire X
 

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x_claire_x;538869 said:
Hi Robyn, I was diagnosed with mixed connective tissue disease last november after five months pain in joints, swollen fingers etc etc.... it took a flare that put me in hospital to be diagnosed. I then started on oral steroids as the injections I had had did nothing much. I had a flare in Dec which put me on 40mgs for a week, I am still tapering down from that. I think it is quite fast to come down from 15mgs in 2.5 mths when you are already feeling a lot worse.:( I am down to 6mgs (taken nearly 3 mths ) but really struggling to get to 5 and I know it gets harder dipping under that, so not sure how it will go. I have been told I may have to stay on a 'background' dose of prednisolone to 'hold' my symptoms and if that helps my quality of life with not too many side effects I would personally be happy with that. Please let your rheumy know that you are having problems with the returning of the pain etc, they will assume all is well if you don't contact them. Sometimes we soldier on and do what we are told when we should listen and trust our bodies. :) I also started plaquenil in Dec and think it is starting to kick in a bit now, it is worth persevering with.... I wish you all the best and get in contact with your rheumy... nag nag nag
Claire X
Thanks Claire!

Oh he knows I am getting worse, I told him at the last visit with him and listed all the symptoms. I was meant to be down to 15mg/day by then but because of the flare ups and neck swelling I had to slow it down and got to 17.5. He still wants me to keep tapering regardless of the fact I am getting worse because of the side effects of being on it for too long.

I forgot to mention I also have PCOS, and am insulin resistant, so he is probably worried about that side of things as well. I think I have read somewhere prednisone can increase your risk of diabetes, and given that I am overweight, gaining on the prednisone and am already pre-diabetic..

Before the side effects kicked in I would have been happy to stay on the 25mg a day dose for the rest of my life, but if there are other drugs that are effective and with less side effects I am all for trying them and keeping the prednisone for emergencies. Especially at the rate I am gaining weight which is not good when I was already 40kg overweight. Oh boy I hope the extra prednisone weight decreases when I am off it! I have gained 5kg in the past month!

I am currently trying to decrease the dose by about 1-2mg a week depending on how the tablets splits work out. I have 25mg tabs and 5mg tabs.

My next visit with my rheumatologist is in mid June. Fingers crossed the plaquenil starts working by then!

How does it feel now that your plaquenil is starting to work, was it gradual? is it making much difference or do you think it will take a bit more time?
 

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Hi Robyn

Welcome to the Forum. I just wanted to say are you sure your Rheumy didnt say 'Undifferentiated Connective Tissue Disease' (UCTD) as opposed to 'Mixed Connective Tissue Disease'? (MCTD)

MCTD is diagnosed when there are classic symptoms of three connective tissue diseases, SLE, Scleroderma and Polymyositis and diagnosis is supported by high levels of ANA and anti RNP antibodies.

Sometimes the names are used a bit loosely and interchangeably although they are quite distinct in their presentations and diagnosis.

Here is a link which explains the difference.

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

I agree that it is great that your Rheumy is prepared to treat you even without supporting blood work and as you know already the Plaquenil can take many months to feel the effect. Often the 'effect' is only truly felt if one stops taking the Plaquenil, believing it is not doing any good - only to discover that it was having an impact on disease activity but the changes were so slow as to feel almost 'unnoticeable' at the time.

Plaquenil is very well tolerated by most people and has few side effects so in that respect it is a good disease modifying drug. It is considered the 'insurance policy' of Lupus drugs by many doctors. Most people here on the boards are on Plaquenil but many others find that they need additional medications to get their disease under control particularly during the early stages or during flare ups.

Welcome again and I look forward to getting to know you.

Joan:rose:
 

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Joandublin;538873 said:
Hi Robyn

Welcome to the Forum. I just wanted to say are you sure your Rheumy didnt say 'Undifferentiated Connective Tissue Disease' (UCTD) as opposed to 'Mixed Connective Tissue Disease'? (MCTD)

MCTD is diagnosed when there are classic symptoms of three connective tissue diseases, SLE, Scleroderma and Polymyositis and diagnosis is supported by high levels of ANA and anti RNP antibodies.

Sometimes the names are used a bit loosely and interchangeably although they are quite distinct in their presentations and diagnosis.

Here is a link which explains the difference.

I agree that it is great that your Rheumy is prepared to treat you even without supporting blood work and as you know already the Plaquenil can take many months to feel the effect. Often the 'effect' is only truly felt if one stops taking the Plaquenil, believing it is not doing any good - only to discover that it was having an impact on disease activity but the changes were so slow as to feel almost 'unnoticeable' at the time.

Plaquenil is very well tolerated by most people and has few side effects so in that respect it is a good disease modifying drug. It is considered the 'insurance policy' of Lupus drugs by many doctors. Most people here on the boards are on Plaquenil but many others find that they need additional medications to get their disease under control particularly during the early stages or during flare ups.

Welcome again and I look forward to getting to know you.

Joan:rose:
Thanks Joan!

No he definately said initially before the blood work that the most likely diagnosis was, Mixed Connective Tissue Disease, but after the blood tests and at the subsequent visit just said, some sort of auto-immune disease (rattling off the list of them all stating it could be any of them).. and at my last visit a few weeks ago with virtually the same test results he said some sort of systemic inflamatory disease.

I had already read about the difference between the two so was surprised he said MCTD over UCTD.

I understand what you are saying about the plaquenil.:) I had no idea just how sick I was, (because the progress of the illness has been so gradual) until I started the prednisone. I felt like a new woman! I had forgotten what it was like to be able to think clearly and efficiently and I even started helping out with the house work again. Hubby was as as amazed as I was in the difference in me. I was accomplishing so much more and it kinda feels a bit cruel to be going backwards again.

I had a bounce in my step, was waking up refreshed after only 6hrs sleep, when normally even 8-10hrs is never enough.. even 12 I still wake up tired, and just more sore from being in bed for so long. I was no longer waking up stiff and sore and needing an hour just to loosen up in the morning. Sigh... it was heaven! LOL

Anyway, enough of that, I am depressing myself! :rolleyes: LOL I guess time will tell how the plaquenil goes and whether or not I need anything else.

Thanks so much everyone for your support. I have needed to speak to people who understood but have felt a bit wierd about coming to a lupus site when I still don't know for sure if that is what it is.

Do many people here manage to work full time with the help of treatment? I am hoping to eventually work from home as I design Digital Scrapbook Kits part time, and would like to eventually make it full time, but haven't been able to do much designing the last couple of weeks as my full time job is taking so much out of me. At least if I design full time I have a lot more flexibility working from home and can rest when I need to.

Anyway, hubby just made me a mocha so I had better go drink it!

Thanks again for the wonderful support, it is really comforting to know I am not alone in all of this.

Robyn
 

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Hi Robyn

Welcome - I hope that [like me] you'll find the shared experience of others dealing with autoimmune diseases is invaluable.

You appear to have had a diagnosis of sorts - a systemic inflammatory disease, often diagnosed as Undifferentiated Connective Tissue Disease [UCTD]. A diagnosis of UCTD means that you have symptoms common to a number of different diseases - which may or may not progress into one or more clearly defined conditions.

Having got to this point, and as long as you are monitored by a Rheumy, it does not really matter whether what you have is Lupus and/or Sjogrens or Mixed Connective Tissue Disease etc., as the treatment is essentially the same.

In my experience, one of the hardest aspects of these illnesses is the realization that being well is not just a matter of getting the right drugs and carrying on regardless. It may prove necessary to rethink your expectations of what you can/should do to obtain optimum health. Caring for children, while holding down a job are enough to run you ragged at the best of times - I know, I've done it!

Stress and physical exhaustion only make the symptoms of these illnesses worse - and thus, in managing an autoimmune disease it is important to minimize these. Despite the financial and other disadvantages of cutting down on your working hours, this may prove necessary in order to obtain some control of your condition. You will find that many suffers have had to reduce or even stop work, for the sake of their well-being.

Take good care of yourself - you owe it to yourself and your family.

Merle
 

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Merle;538875 said:
Hi Robyn

Welcome - I hope that [like me] you'll find the shared experience of others dealing with autoimmune diseases is invaluable.

You appear to have had a diagnosis of sorts - a systemic inflammatory disease, often diagnosed as Undifferentiated Connective Tissue Disease [UCTD]. A diagnosis of UCTD means that you have symptoms common to a number of different diseases - which may or may not progress into one or more clearly defined conditions.

Having got to this point, and as long as you are monitored by a Rheumy, it does not really matter whether what you have is Lupus and/or Sjogrens or Mixed Connective Tissue Disease etc., as the treatment is essentially the same.

In my experience, one of the hardest aspects of these illnesses is the realization that being well is not just a matter of getting the right drugs and carrying on regardless. It may prove necessary to rethink your expectations of what you can/should do to obtain optimum health. Caring for children, while holding down a job are enough to run you ragged at the best of times - I know, I've done it!

Stress and physical exhaustion only make the symptoms of these illnesses worse - and thus, in managing an autoimmune disease it is important to minimize these. Despite the financial and other disadvantages of cutting down on your working hours, this may prove necessary in order to obtain some control of your condition. You will find that many suffers have had to reduce or even stop work, for the sake of their well-being.

Take good care of yourself - you owe it to yourself and your family.

Merle
Thanks Merle

Yes, I have been keeping that thought in the back of my mind and would dearly love to quit right now! I kind of feel like I am in limbo at the moment not knowing if medication will help me work full time or not. I have also been contemplating the idea of dropping back to 4 days a week, but if I do it will need to wait till we move and sell our current house.

The trouble is we are currently building a house and as I am the primary income earner in our household, if I don't keep working we can kiss that house goodbye. We half thought about not building it after all but we figured if we didn't do it now, we would never be able to do it. So we have plunged ahead hoping that things will work out ok, but if worst comes to worst and I cannot earn enough to keep the house, we will just have to sell it and find something cheaper.

My hope is that I can eventually design full time giving me much more flexible hours working from home so I can work as much as I can and rest as much as I need. If all goes to plan, my potential to earn as much or more as what I am now in my full time job is a possibility and my goal.

Thankfully my current full time job is a desk job, so it is not physically tiring, well for a normal person at least!

It is really hard to let go of the idea of having some sort of control over your life I guess. Unfortunately dh has ADHD which restricts his job prospects and earning potential somewhat. Mind you I am convinced there is better paying work out there for him, but he just hasn't the confidence to believe he can find it and I also think he is afraid of making a change. He is currently self employed in an industry that just doesn't pay very well and is a dying craft.

So for now I guess we just have to play it by ear. If it turns out I have to quit working either dh will have to find a better paying job, or we will have to sell the new house. Which will be heartbreaking!

I do hear what you are saying, I guess I just haven't yet entirely given up the hope I can do it all with the right medication! LOL Or maybe it is just that I don't feel like I have a choice??? :worried:

Ugh, life would be so much easier if hubby was able to support us financially on his own. :sad: Ok, time for bed, I am just depressing myself further now! So much for quitting the zoloft!

Tomorrow is a new day.. heres hoping it brings only brighter things for everyone! ;-)
 

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Hi Robyn, I would say that the plaquenil is starting to work.. I can now do something normal and not get such a big 'pay back' day the next day! I was gardening yesterday and though my fingers are swollen and sore, my arms have not done too bad, which is a miracle for me. My muscles and joints seem to be made of memory foam; if I abuse them today I pay tomorrow :rotfl: I understand your need to get off the steroids but you can get them in smaller mgs.. I have 2.5 and 1mg tablets to tailor the taper to myself, which is handy for me as I don't wish to end up back in hospital flaring, I also didn't put the weight on with them and don't have complications like your diabetes etc to contend with so you have more urgent factors to deal with...I also got told by another Consultant that sometimes plaquenil can take 9-12 months and not to give up on it after only six! I was put on 200mgs then when I was ok with it and had my vision checked it went up to 400mgs a day to try and speed up the effect, not sure what dosage you are on? I do hope it works for you but as the others have said it does gradually creep up on you that maybe it is helping rather than be an obvious effect...I wish you all the best with your meds and hope your pain subsides soon.... take care,
Claire X
 

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Hi Robyn,

Welcome to the site. Even though you have not been diagnosed feel free to ask any questions you might have. We have all been in limbo land and understand your need of support right now.

In answer to your question about Plaquenil, yes there is hope of being able to lead a fairly normal life when the Plaquenil kicks in. Once my disease was controlled I managed to work for 14 years and raise a family. I did have to listen to my body though to keep things on a fairly even keel. Naturally I had flares along the way but I was stable for quite a long time.

Take care,
Lazylegs
 

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Hi Robyn, I am on the plaq with a diagnosis of UCTD. Your symptoms sound a lot like mine. At my worst I couldn't walk, get out of bed or make memories for 18months. I have been ill consistently for 10 or so yrs and had wondows of it beforehand. I don't think it matters what they come up with for now because thank goodness they make sure the drugs were given are safe and prevent internal damage as best as it can and cover all of the deseases we may have.

The problem is that the steroid was a quick fix but the plaq will hopefully be a longterm fix for you and for me. I tend to think of it like this, if it took me yrs to get this ill then how can I expect to be well within months? Give the Plaq time if you can and be good to yourself in the interim xxP
 

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Robyn,
Hi and Welcome to the site. You will find that it has a lot of information for you to read and stories of others and how they are handling things with lupus and other diseases. I do understand why you would feel so confused and frustrated as the road to a dx is very long and often painful to say the least. It is good that your parents and husband are their for you and help all that they can.
It also sounds like you got lucky with the rhuemy and he is working to find out what is going on with you and also trying to find something that will help you in the mean time. Is he trying to aliminate lupus at this point or find a way to say you have lupus? I am sure he will not just come out and say it but what feeling do you get about that from him? I know what you are going through as I had been working for years and fighting the extreme fatigue (I had my dx since I think 1992, like you I have trouble with memory) until last september when I had to drop a lot of hours for me. Is it possible for you to do some of your work at home? Is it also possible to split your time into like 4 hour blocks? Just thought maybe something to think about.
I do hope that you will join us in the chat room as you can get some real good live feedback in there and the girls are the best in the world. Thank you for sharing your story with all of us and I do hope that you find your answer soon and feel better soon also. My name is tammy and if you ever just need to talk drop me a message.
 

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x_claire_x;538939 said:
Hi Robyn, I would say that the plaquenil is starting to work.. I can now do something normal and not get such a big 'pay back' day the next day! I was gardening yesterday and though my fingers are swollen and sore, my arms have not done too bad, which is a miracle for me. My muscles and joints seem to be made of memory foam; if I abuse them today I pay tomorrow :rotfl: I understand your need to get off the steroids but you can get them in smaller mgs.. I have 2.5 and 1mg tablets to tailor the taper to myself, which is handy for me as I don't wish to end up back in hospital flaring, I also didn't put the weight on with them and don't have complications like your diabetes etc to contend with so you have more urgent factors to deal with...I also got told by another Consultant that sometimes plaquenil can take 9-12 months and not to give up on it after only six! I was put on 200mgs then when I was ok with it and had my vision checked it went up to 400mgs a day to try and speed up the effect, not sure what dosage you are on? I do hope it works for you but as the others have said it does gradually creep up on you that maybe it is helping rather than be an obvious effect...I wish you all the best with your meds and hope your pain subsides soon.... take care,
Claire X
It is so good to hear that the plaquenil is working so well for you. I am on 200mg a day and wondered if increasing the dosage might speed up the effect. If I have no joy by the time I see my doc I will ask him about it.

I am still on my 15mg dose of Prednisone as I will have 3 days alone with the kids this week as DH will be away so I thought it best not to risk a flare when I have no help around. I will look at decreasing the dose again next week if I can. Mind you I am having a major flare at the moment anyway!! :( So fingers crossed I feel better before he goes away!

lazylegs;538949 said:
Hi Robyn,

Welcome to the site. Even though you have not been diagnosed feel free to ask any questions you might have. We have all been in limbo land and understand your need of support right now.

In answer to your question about Plaquenil, yes there is hope of being able to lead a fairly normal life when the Plaquenil kicks in. Once my disease was controlled I managed to work for 14 years and raise a family. I did have to listen to my body though to keep things on a fairly even keel. Naturally I had flares along the way but I was stable for quite a long time.

Take care,
Lazylegs
Thanks for the info, I am glad to hear the plaquenil has worked so well for you and that you were able to work etc. That is very comforting to hear!

pollianna;538967 said:
Hi Robyn, I am on the plaq with a diagnosis of UCTD. Your symptoms sound a lot like mine. At my worst I couldn't walk, get out of bed or make memories for 18months. I have been ill consistently for 10 or so yrs and had wondows of it beforehand. I don't think it matters what they come up with for now because thank goodness they make sure the drugs were given are safe and prevent internal damage as best as it can and cover all of the deseases we may have.

The problem is that the steroid was a quick fix but the plaq will hopefully be a longterm fix for you and for me. I tend to think of it like this, if it took me yrs to get this ill then how can I expect to be well within months? Give the Plaq time if you can and be good to yourself in the interim xxP
Good point about getting better within months! ;-) I guess the taste of feeling normal again is hard to let go of! ;-) I want it back! :hehe::rolleyes:

I haven't been that bad that I have been bedridden for more than a day. I can't even imagine what that must have been like. Ugh.

onetay;539001 said:
Robyn,
Hi and Welcome to the site. You will find that it has a lot of information for you to read and stories of others and how they are handling things with lupus and other diseases. I do understand why you would feel so confused and frustrated as the road to a dx is very long and often painful to say the least. It is good that your parents and husband are their for you and help all that they can.
It also sounds like you got lucky with the rhuemy and he is working to find out what is going on with you and also trying to find something that will help you in the mean time. Is he trying to aliminate lupus at this point or find a way to say you have lupus? I am sure he will not just come out and say it but what feeling do you get about that from him? I know what you are going through as I had been working for years and fighting the extreme fatigue (I had my dx since I think 1992, like you I have trouble with memory) until last september when I had to drop a lot of hours for me. Is it possible for you to do some of your work at home? Is it also possible to split your time into like 4 hour blocks? Just thought maybe something to think about.
I do hope that you will join us in the chat room as you can get some real good live feedback in there and the girls are the best in the world. Thank you for sharing your story with all of us and I do hope that you find your answer soon and feel better soon also. My name is tammy and if you ever just need to talk drop me a message.
Thanks so much for your support and input. I am able to work from home at times if I need to, but there are certain things I have to do there.

I am hoping that once our house is built I might be able to drop to 4 days a week. I find that I am ok most of the time Monday to Wednesday but by Thursday I get pretty tired, and sometimes need a sick day to recooperate. If I know I don't have to work Friday, it might be easier to get through the day on Thursday, or even move my days around.

I will have to try and check out the chat room would be nice to get to know a few of you better and chat in real time. Are there specific chat times at all?

I am currently having a flare even tho I haven't reduced my prednisone dosage again yet.

Have been getting some major fluid retention all over, especially my feet which are huge. I haven't had them that big since I was pregnant! My joint pain has increased and today I also had some rectal bleeding.

Does anyone know if rectal bleeding is an Autoimmune symptom? And of which diseases? I have had it before a few times but kinda dismissed it because it stopped and I also have a hemarroids from having kids. But this bleeding is different, it is more and is not painful like the roids usually are. And it ends up in the bowl which I have never had with the roids. Sorry gross! Given I have had it now again I figure I had better get it checked out so have made an appointment with my gp.

Would love any input on this if you have it.
 

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Hi Robyn,

Sorry to hear you are still flaring. I hope you start to recover soon.

Have you been constipated at all? Sometimes if you have a hard bowel it can scrape or tear the anal lining causing bleeding. If this continues you should definitely get checked out.

There are no specific times to use the chat room. Usually if you go in and wait a few minutes others will join you.

Take care,
Lazylegs
 

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Hi,
Well, the others have been giving great advice to you...as I am "new", I don't know that I can help much...other than to say welcome, and I hope you get some answers and feel better soon... I also have recently started the Plaquenil, been on it almost 4 weeks. I know it can take a while to kick in, so I am trying to be patient! I am having a rough time with worse heartburn, enough that I am having to eat a roll or something similar at night...hubby and I have beds that raise, and I take Pepcid-ac for acid reflux, so I am hoping this is one side effect that will level off.?? I take it with food/and or milk product, but the heartburn seems to kick in a few hours later...
As far as the rectal bleeding, I know that when my hemmorhoids "act up" I can have that...but, I would check with your Dr. - better to be safe...good luck to you,
I
 

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Hello Robyn, I don't think we have "met" yet. When a GP didn't know what was wrong with me he tried me on 30mgms of Pred. decreasing by 5 mgms each week. The improvement on 30 mgms was bizarre. I looked younger, my clothes fitted better even my voice sounded better. I could use my hands really well. The beneficial effects lasted until I was down to about 15 mgms. At least the vast improvement had proved my symptoms were inflammatory.
That feeling when you are feeling better than you ever dreamed of is very strange. I felt like someone had lifted a curtain and let me glimpse another life. Sounds melodramatic but you may understand. Some Docs. now do not do this sort of steroid trial as they think being fit then getting ill again on tapering is too hard emotionally.

There are many medications out there, so you have every reason to be optimistic.
x Lola
 

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Discussion Starter #18
lazylegs;539391 said:
Hi Robyn,

Sorry to hear you are still flaring. I hope you start to recover soon.

Have you been constipated at all? Sometimes if you have a hard bowel it can scrape or tear the anal lining causing bleeding. If this continues you should definitely get checked out.

There are no specific times to use the chat room. Usually if you go in and wait a few minutes others will join you.

Take care,
Lazylegs
I do get constipated on and off, just as often as I have diareah probably! LOL But I didn't before the bleeding. Most times when I get the bleeding I have had diareah. (can never remember how to spell it!) I didn't get any more bleeding so didn't end up going to my gp but if it happens again I will definately go see her!

iksyfaye;539589 said:
Hi,
Well, the others have been giving great advice to you...as I am "new", I don't know that I can help much...other than to say welcome, and I hope you get some answers and feel better soon... I also have recently started the Plaquenil, been on it almost 4 weeks. I know it can take a while to kick in, so I am trying to be patient! I am having a rough time with worse heartburn, enough that I am having to eat a roll or something similar at night...hubby and I have beds that raise, and I take Pepcid-ac for acid reflux, so I am hoping this is one side effect that will level off.?? I take it with food/and or milk product, but the heartburn seems to kick in a few hours later...
As far as the rectal bleeding, I know that when my hemmorhoids "act up" I can have that...but, I would check with your Dr. - better to be safe...good luck to you,
I
Thanks, if it happens again I will definately go see her. I also suffer from reflux but had it before I started the plaquenil or any other medication for that matter. I am on anti reflux meds for it which I forget the name of right now. I am flaring again at the moment as I have just reduced my prednisone dose again by 2.5mg. I am down to 12.5mg/day now. Hanging to get off it as my weight gain is driving me nuts. I am running out of clothes that fit and scared to weigh myself! I dread to think how much I have gained!

LolaLola;539597 said:
Hello Robyn, I don't think we have "met" yet. When a GP didn't know what was wrong with me he tried me on 30mgms of Pred. decreasing by 5 mgms each week. The improvement on 30 mgms was bizarre. I looked younger, my clothes fitted better even my voice sounded better. I could use my hands really well. The beneficial effects lasted until I was down to about 15 mgms. At least the vast improvement had proved my symptoms were inflammatory.
That feeling when you are feeling better than you ever dreamed of is very strange. I felt like someone had lifted a curtain and let me glimpse another life. Sounds melodramatic but you may understand. Some Docs. now do not do this sort of steroid trial as they think being fit then getting ill again on tapering is too hard emotionally.

There are many medications out there, so you have every reason to be optimistic.
x Lola
Oh I this is EXACTLY how I have felt. it just felt so amazing to overnight feel normal again.. I miss it and want it back.. but could do without the prednisone side effects!!!

I still have no idea if the plaquenil is working because every time I drop the prednisone dosage I have a flare. I am hoping that once I am off the prednisone completely whether or not the plaquenil is working will become apparent. Will try and be patient because I know it takes time tho!

I am feeling a bit down at the moment as my rapid and contstant weight gain and neck and facial swelling and overall bloating is really depressing along with the flare I am having at the moment.

My skin looks terrible at the moment because my sores on my arms and legs as well as my scalp are getting worse again. (they were nearly gone!!) They are all over and look like I constantly scratch them as they are always red and inflamed and have dry scaley patches around them.

Does anyone else here exprience sores like this? Mine always seem to be multiply and get more inflamed when I am having a flare. Does anyone have photos I can compare mine to? I must remember to take some photos of mine so I can see if you all think they look like lupus type lesions or not. Are there any good topical treatments for them? I have been using bio-oil and occasionally trying cortisone cream but when I am flaring it doesn't do much. The cortisone cream does seem to improve them a little when I am not flaring but as soon as I have a flare they get worse again.

Anyway, I had better get back to work, I am suposed to be doing the payroll!
 
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