[maryfrances]

Hi---new here
I was diagnosed in the late 90's so have been dealing with lupus and several other autoimmune disorders (asthma, Hashimoto's thyroiditis, Reynauds, RA , Sjogren's and Erythema multiflora) for a while now. I also have congestive heart failure that the drs's,after almost 10 years, finally decided that it was caused by the lupus.I also have limb-girdle muscular dystrophy. All in all, I manage okay most of the time. It was taking a kenalog shot (40mg)(I started this last spring) every 6 weeks to keep everything under control, but my dr. decided,after talking to my rheum. that it was too much. It accumulates when taken that often. I am trying to get along with it every 3 months now, but am in agony after about 6weeks. Last summer was the first in many years that I could actually be out in the sun!

Do any of you have several AI problems like I do and how do you deal with them?

Someone asked about the butterfly rash...it was several years after my diagnoses that mine showed up and it isn't quite typical. I don't get it on my nose except for a tiny area on the bridge and it extends down onto my neck from my ears to the "V" in the front of my throat. It doesn't itch anywhere but on my neck and shows up in the sun, the sun through a window or even if I'm right next to a hot bright lightbulb....go figure!

Have any of you had intestinal problems?

maryfrances

 

[Katharine]

Hello Maryfrances and :welcome:

I'm sorry to hear of all your problems and how serious they are but, in answer to your question, yes, many of us do have several AI problems together. For my part I have Hashimotos, Lupus with a polymyositis overlap and APS.

It's true that kenalog shots every 6 weeks is pretty frequent. I do hope that you'll be able to find some other type of relief

Some people do have rashes that are not the "typical" butterfly rash. The V line and neck areas are quite commonly affected areas as well.

One thing worries me a little in your post. You mention being able to be out in the sun again... you do need to be very careful with the sun. I mean, I'm sure you know that but it is not only the "visible" problems (rashes and photosensivity) that we have to be careful of but also the invisible ones. The sun is responsible for inflammation in general in lupus patients, that means joints and even organs can be affected. Top rheumatologists recommend wearing highly protective sunscreen ALL year round, INDOORS and outdoors...it's not just a problem of "burning".

Sorry, don't mean to lecture...one of my pet subjects :lol:

Katharine

 

[maryfrances]

Hi Katherine---Thank you for the welcome!

I didn't know that about the sun....I had heat stroke many years ago and I can't be out in it long as it makes me sick to my stomach...have been that way ever since the heat stroke. It was nice to be able to take a short tour of the yard without getting a rash on every exposed area that was so nice last summer.I had thought that if the rash wasn't there, it was okay, so I really thank you for that info. I found that I burn even with a 50 or complete sunscreen and many of them make me itch so I don't use them much. I just try to stay out of the sun, even in the house where it comes through the windows.

The rheum. just gave me a new drug to try: Salsatane. Its a derivitive of aspirin and isn't supposed to cause bleeding/bruising. I can't take aspirin for more that two days or I start bruising pretty badly. because of the chf, I can't take a lot of the meds for lupus as they can cause, and almost always do, swelling. I'm hoping it will work
maryfrances

 

[Katharine]

Hi again,

Yep, I also forgot to mention that many people, myself included, even have problems with flourescant (strip) lighting like you get in big stores and at work sometimes. I actually made sure last summer to wear sunscreen every day on every bit that stuck out (yep even in rainy Belgium) and it made a big difference to general wellbeing even if it is, admittedly, a pain to have to apply sunscreen so often. It is also highly recommended to cover whatever can be - long sleeved T shirts/shirts, hats (yep, I look an idiot in one too :lol and long skirts/trousers. Sun screen has its limits and of course one is that it needs to be reapplied regularly!

Here's one of many "sun links" http://www.uklupus.co.uk/fact12.html

Are you actually allergic to many lupus meds then? What exactly are you on? It sounds like you have a lot of trouble controlling disease activity

I also forgot to answer the intestinal problems question - Yes, a lot of people have intestinal problems that may or may not be directly linked to their lupus. Some people have IBS, some GERD or gastroparesis... and others that I can't remember off the top of my head.

Katharine

 

[ROSJAC]

Hi Maryfrances and welcome to the Lupus site. I am a fairly new member, but wished I had been aware of this site when I was first dx with Sle, 11 years ago. Finally to have contact with others that understand is a Blessing. My heart goes out to you. You seem to be dealing with more than your fair share of health problems. Many with Lupus have intestinal problems. Sometimes I think it is because of all the meds we take. I take Prevacid which helps. Also, not laying down for 3 hours after you eat helps, but when you suffer from fatique, it is hard to wait 3 hours! Sending you good thoughts, Rosie

 

[LolaLola]

Hello MaryFrances,

Katherine has given you excellent advice re. sun avoidance. It can make a big difference.
Welcome to the site.
x Lola

 

[lazylegs]

Hi Maryfrances,

I am happy you found us and decided to join. Please feel free to post any questions you have. The members here are more than willing to help if they can. Don't forget to stop by the chat room. It is a great way to get instant feedback on questions and interact with others suffering with Lupus also.

Take care,
Lazylegs

 

[maryfrances]

Thank you all for your good wishes. Sometimes just knowing there are others with the same kinds of problems makes it easier to deal with.

Katherine---you asked what meds I'm on. That gets complicated with everything sometimes but here goes: I take Plaquenil (hydroxychoroquine), Flexeril (?)it's a muscle relaxant,and the rheum. just started me on Salsalate for pain, I'm trying to cut back on the kenalog shots with the salsatane.
For the congestive heart failure I take lanoxin and diuretics: bumetedine and spironolactone, and zaroxolyn(sp?) when I need it. Because my body doesn't hold potassium properly, I take about 100 microequiv with the bumex and spironolactone daily. I also take coreg for my heart and BP
I have gerd and take prilosec for that., and singulair and albuterol inhalor for asthma. Amytriptyline for pain at night Unfortunately, it only lasts 4 hours---any little wrinkle in the bed sheets causes me to wake in pain.

It's not so much that I am allergic to the sle meds, but that a large number of them also can cause fluid retention which messes with the chf. I have tried many nsaids that didn't work or caused fluid retention, too.I had big hopes for Lyrica when it came out but it made me hallucinate and everything looked black and white..it wasn't a pleasant experience.
Well that's enouigh babbling for now
thanks again for everyone's help
maryfrances

 

[KarolH]

Hi Maryfrances and I am so happy you have found this place to hang your hat. You will love it here and the people are supportive, friendly and very knowledgeable.

I am pretty new to Lupus and certainly I do not have as many issues as you do but certainly this past year has been a test for me. You asked about GI issues.

I no longer have a stomach, had that removed in July 2007 so YES...I am the queen of G.I. issues. For the longest time no one knew why I was getting re-current GI ulcers that were giant, upwards of 10 cm but now they are convinced that it is Auto Immune related, probably a combination of Lupus, APS and Scleroderma.

I have been on every stomach and acid surpressing medicine known to man and yet nothing seems to work. I am very sorry your dealing with Congestive Heart failure. My mom has been dealing with this off and on for a couple of years now and that is no fun at all.

I do hope to get to know you better and certainly hope that the doctors can get your pain under control a little better. A wrinkle in the sheet causing pain tells me that the meds need a little adjusting.

So, are you from the UK, USA or somewhere else? I am a Jersey girl most of my life. Take care of yourself and come join us in the chat room sometimes.

So glad you found this forum.:wink2:

 

[onetay]

Maryfrances,
Hi and welcome to the site. You will find that it is very common to have multiable problems with the lupus, some accompany the lupus and others just don't want the lupus to be lonely so it joins right in lol. Lupus is not a go by the numbers disease so it is common to have something out of the blue first and the rest later, imagine that one. I am one of many that have all kinds of problems and all kinds of meds to help with it lol. It sounds like things were working for you for awhile until the doctors got all happy and changed your routine. A question please, ( I know a lot of us are wondering but just not sure how to ask so I will be the brave one) How was it to be out in the sun and enjoying it with no rash or lupus signs? It has been a very long time since I was able to do that and it seems it might be even longer. Well, I had to ask. We have a chat room that I hope to see you in soon, in the mean time, be healthy and well.

 

[Lily]

Hi maryfrances and welcome :welcome:

I am just wondering if your doctor has discussed some of the steroid sparing medications used for Lupus. Methotrexate is one that comes to mind as far as helping to control the joint problems to a greater degree than Plaquenil alone. It should not cause you problems with swelling or affect your CHF at all?

Hope you get a lot out of the site, it's very helpful both in terms of support and information to help us live the best we can with our diseases.

love
Lily

 

[maryfrances]

Tammy---I used to live in the sun from morning to sunset. Love gardening and all. I missed it so much! Last spring, my gp and I thought it might be okay to use 40mg kenalong shots every 6 wks instead of the 80mg I was getting every 3 months. At around 3-6wks after the 80mg shots, I would get real sick and have major pain flare-ups and swelling in my hips to the point I couldnt' do my PT or recumbant (sp?) stairstepper. Well, I was out in the yard to show my gardening helper where I wanted weeds pulled, things planted etc,and I didnt' get a rash! Normally, it started in less than 10 minutes. It was heaven to be outside!!! My skin didnt' burn or feel like it was on fire---I haven't felt so good in quite a few years....but, my gp talked it over with the rheumatologist a month ago and they decided I have to wait 2-3months for the shots because of the cumulative effect.

It's been 8 weeks today since my last shot and I had a miserable week last week. I have had swollen hips and hip joints for 2 weeks, my colon seems to have quit working--food goes in---nothing comes out. It took 4 days of laxatives, prune joice and colace to get going again. I was going to try for 3 months, but instead, I'm going to ask my gp to see if he can track the steroid amounts in my body. I truly don't think they last 3 months.
We went to kenalog because it doesn't affect muscles as much as prednisone adn with limb girdle dystrophy, I have to be very careful of that to preserve what little I have left.

I don't mind questions, especially if it helps anyone
hugs
maryfrances

 

[keebler]

Hi Maryfrances,

It is nice to meet you.

How did your doctors finally decide it was lupus that gave you heart failure? In 2004 I found I had unexplainable heart failure.

Everyone has given you great advice. Welcome to the lupus site.
Take care,
Lyn

 

[maryfrances]

Hi Karol---first, I am from North Dakota--USA
the digestive tract problems I have that are the worst is the constipation---or actuall,what feels like nothing is moving up in the beginning and middle colon. Actually kind of no feelings or urges to go ....when I have recently (in the first 6 weeks) had a kenalog shot, I dont' have much of a problem at all....I will see the dr again tomorrow to discuss all this. I hope there will be something he can advise for it. I take colace evryday adn that does help some.

It must have been very difficult for you to have stomach problems lilke you have. The only time I have stomach problems is when I have so much potassium to take. It sometimes just eats my stomach up until it burns....I guess that's what it does to it...causes burns inside. I try to take it with lots of water. My heart goes out to you!

It's funny, looking back, the first flare I had was a 3 week "migraine" when the blood vessels in my brain inflamed. It was a few months later that my cardio discovered the chf so it probally occurred at the same time.

About the wrinkle sensitivity---my rheum thought that the plaquenil should have stopped it. She is now having me try salsalate and it does help quite a bit, but the pills are hard to swallow. I have a very dry mouth and throat from the sjogren's.

I hope to get to know you all better in time too...
mary frances

 

[maryfrances]

Lynn---the cardiologist and my neurologist (for the muscular dystrophy) ruled out everything else. My heart had been fine up to then and it was rather sudden. I was in my early 40's and had seen cardios previously due to a heart attack at 36 (no damage found after) and an almost one at 42. I say almost because my friends got me into a dr and a hospital at the very first symptoms and the drs were able to stop it from going into a major heart attack. Again, there was no physical damage. My rheum thinks I may have passed blood clots caused by the sjogrens but there is no way to know. Heart problems run in my family. Because there was no sign of chf just months prior helped to determine where the cause probably lies
maryfrances

 

[iksyfaye]

Hi Maryfrances,
Just wanted to say hello. I am newly diagnosed with SLE with secondary Sjogrens, several prior diagnoses, including chronic Interstitial Cystitis (IC), it is a bladder disease, the bladder lining is defective and I get ulcerated areas, bleed at times, makes bladder scarred, and very small...feels like a UTI, but no infection...cause is unknown, but some do think it is autoimmune...I think it is related in my case...anyways, you have given some good information, too...I have a horrible time with even 1 tiny little wrinkle in my sheets...my family usually makes a joke of it...call me the "princess and the pea"...but, now that you mention it...it makes sense...I'm sorry you have such a time of it...and I hope you feel better soon.
Take Care,
I
PS Rheumy put me on Plaquenil...I won't know how to act if in a few months I don't have to remake the bed every time I get up...lol...hubby will probably wonder who is in bed with him!! haha

 

[maryfrances]

Hi iksyfaye---I just saw my GP today....he had started me on amytriptiline (spelling?)and it helps a lot for the pain/wrinkles problem. I told him today that it wasnt' working quite so well now. I was taking 5mg. Today he said to double it...seems that up to 50mg is quite normal for the peripheral neuropathy, I think he called it. It really takes the edge off. None of my family can understand how it can possibly hurt so much, but my dear husband will get up and pull the wrinkles out for me. I can't roll over myself due to the dystrophy so he adjusts the sheets whenever he moves me, thank God!
He also gave me a B12 shot today as that also helps with joint/arthritis pain relief. I used to get them all the time and don't really remember why I stopped.It may have been that the steroids stopped the pain so I didnt' use them anymore.
Maryfrances

 

[Maia]

Have you been advised to stay away from NSAID's due to your other heath issues? You may want to ask about trying Arthrotec for your pain. It's an NSAID with a stomach protector and works great for arthritis pain for many people - plus it has a stomach protector that has a side effect of getting things moving through the digestive tract

Bumping up your dose to 10mg will hopefully help a lot. You can go much higher than that too if you need to...

 

[iksyfaye]

Hi Maryfrances,
That is great that you have found something that may help you...no one can really understand unless they have been there...When I was first diagnosed with the IC, the Dr. had me try amitryptiline, but I couldn't take it...it can cause bladder retention, and since that is a problem for me anyways, it just compounded it...but, we are all different, so I am glad it is helping you...My hubby also is great to try and keep the sheets "smooth"...I am up/down a lot in the night with the IC, and each time, of course, the bed has to be "straightened"...I guess after 26+ years of marriage, hubby is so used to it that he can help smooth the sheets in his sleep!! LOL...Take care, and heres to hoping one day we all have no problems with a "rumpled bed"!!...hahaha
I

 

[maryfrances]

There are many NSAIDS that I can't take because they cause fluid retention (bad for the chf) and many just don't work, some also cause bleeding and I have a slight problem with that. Even an aspirin a day for more than two or three days and I start to bruise up pretty bad. I will ask about the Arthrotec....it sounds real familiar so it may be one of those that I can't take. I had to stop the Salsalate--it worked great for pain, but it made my colon "stop". It took almost a week to get it going again.

I just had a kenalog shot last friday and so feel pretty good pain wise. I caught a cold since then and am hoping it doesn't go into pneumonia. It happens every year about this time when the temps fluctuate so much. So far, so good. It has kept me out of PT and exercising since last tuesday, tho. At least it doesn't seem to affect the AI stuff, just the dystrophy. My muscles are weak to start with so that's why it's a problem.

Thank you all for so much good info in how you manage these problems. It gives good ideas of new things to try to cope better.
hugs to you all!
Maryfrances