[JacquiC]

Hi,

I am a 39 year old female who has been officially diagnosed with a Connective Tissue Disease and unofficially told it is Lupus. Blood tests have shown positive ANA throughout. Received this diagnosis 18 months ago after suffering extreme fatigue, joint pains etc since giving birth to my beautiful daugher in 2005.

My medication is Prednisolone and Hydroxychloroquine plus Adcal and painkillers when required which is every day now. My consultant is adamant that I need to come off the Prednisolone as I cannot stay on them permanently however I have now suffered 3 flare ups in the last year due to attempts to reduce the Prednisolone. This is becoming very frustrating as each time I have a flare up I am ill for weeks and off work for months trying to get it under control. This is having a huge impact on my home life and work. My employer is also not being very helpful.

I am struggling to cope with my work as it is a stressful, high profile role. The memory loss, lack of concentration and general fogginess are having a huge impact. My employer can see that I am not able to fulfil the role in the way they require and are making noises about underperformance. I am currently being assessed for Long Term Disability however my own GP feels that I should still be able to work. Feel like I am caught in the middle and struggling to cope with the physical and mental impact of it all.

If anyone has any advice, it would be much appreciated.

Thanks.

Jacqui:worried:

 

[Katharine]

Hello and welcome

From what you are describing it is clear that your disease activity is not stable enough to allow you to come off prednisolone just now without something else to replace it.

Has your doctor not mentioned using other "steroid sparing" drugs such as imuran (azathioprine) to help control disease activity? There are plenty of drug options out there and plaquenil alone is not always sufficient for people.

On top of that, when reducing prednisolone it has to be done very very slowly (often 1mg at a time) over a period of months.

Reading between the lines I'm wondering if you're consultant has experience with auto-immune diseases. Not all rheumatologists do (if he is a rheumy) and it might be very worthwhile looking out for one that does and getting a second opinion. There is a find a doctor section here on the board where you can ask for recommendations which might be useful.

I know exactly how you feel about being caught in between two things. I think all of us have been there at some stage and it is very frustrating indeed. I was lucky to have great support from my doctors which helped a great deal.

bye for now and hugs :hug:
Katharine

 

[Clare.T]

Welcome Jacqui

It is very odd that the consultant hasn't proposed a steroid sparing disease modifying drug :there is methotrexate in addition to Imuran which is used more for the arthritic type of symptoms. Some doctors will add another anti malarial called Mepacrine to the Plaquenil. This combination can make a great difference
It's clear that the lupus isn't well controlled yet and it seems your pain issues aren't being adequately addressed.
In your place I would check out the diagosis/ blood tests articles on the information section of the forum to make sure all the right tests have been done.
Brain fog is very common and might be due to lupus itself, painkillers, pain, anxiety and depression, lack of sleep, fibromyalgia, anemia, thyroid - the last three should be tested for.
Other tests that should be done are the lupus anticoagulant and anti cardiolipins.
I hope you have a helpful GP & can get a second opinion. The possibility is that your quality of life and livelihood are being seriously affected by one doctor's failure to treat promptly and effectively.

Let us know how you get on - we'll help you all we can

Bye for now
Clare

 

[eagle55]

hello Jacquic , you will find this site a great help. your needs are not being addressed in the right manner. finding a good dr. can be diffult. but you must try. i have had lupus since 1985 back then so little was known. do you keep a journal? that is very important . for you as well as your dr. there are sooo many new things out there now to try it can sometimes be hard to find the right mix. but this is a great site. people share there experinces with each other to give you idea and let you know you are not alone in this quest. sometimes i scream in a pillow.but right now you just need to get some relief. i have taken predisone for over 20yrs and for some reason i do not suffer the side effect like others.. but this lupus is so different for each of us. you must just keep looking and asking lots of questions. and if your need to vent there is always someone to listen here.. well my brain fog is really starting to get foggy so i will stop for now . feel free to email me anytime. and you will get it under control. don't get me wrongg it is not all roses but there are sure some nice ones on the trip. take care and looking forward to talking with you soon.. later sue

 

[LolaLola]

Dear Jacqui, You have been given good advice. Lupus often takes a bit of a cocktail of meds. and even then can take a while to improve.
You do not need stress at work either!
It may be you need a different Consultant and maybe even a more sympathetic GP. many of us have had to say Good bye to Docs. ranging from the well intentioned to the criminally negligent.
Stay with us, we have all had experiences like yours along the way.
x Lola

 

[JacquiC]

Confused & Frustrated Update

Thank you all very much for your kind and helpful replies. These have given me a lot to think about and a lot of questions for my GP tomorrow when I next see him.

There are clearly other options out there which neither my GP or consultant have discussed with me and I need to understand what these are and how they may help me. The thought of having to find another GP and consultant does fill me with dread as it has taken so long to get this far, but I know I may need to do it to ensure I am getting the right care.

I had been thinking about keeping a journal. I have notes that I have made up over the last year or so but I feel I need to formalise these and keep them more up to date. Thanks for all your advice and it is good to know there are people in a similar situation who I can turn to.

Keep well and I will update you on my progress.

Jacqui

 

[Jenkay]

Hello,

You are right on target with keeping a journal. If I didn't log how I'm doing each day and all of the odd things that come up I would be lost when I go to see my rheumy.

Right before my appointment I go through each day and write down any important items I need to tell her, new symptoms, how many migraines, how many good or bad days, etc. There are always things that I've forgotten about from a couple weeks back and if I didn't have them logged in my journal I would never remember.

I use a calendar journal date book that shows a week at a time and that works great.

Good luck, Jen

 

[msannie]

Baby Steps

Dear Jacqui, and I do mean DEAR,

I have walked in your shoes, in almost the exact size. I was diagnosed with Mixed Connective Tissue Disease officially after a positive ANA and unofficially with Lupus when I was in my early 30's (by the way I had just had a miscarriage). I was put on extremely high doses of steroids (prednisone) and hydroxychloriquine with other non-steroidal anti-inflammatory drugs. I was told I absoultely had to come off of the steroids, however every time I would reduce the dosage I would have a flare-up. Fortunately I did not have the same pressures with my employer, as she was very understanding and I was able to work part-time and from home. However, I was beginning to think that this merry-go-round was never going to stop until I started seeing a new rheumatologist. He began very, very slowly tapering the dose of steroids and started to administer other immuno-suppressant drugs. I think I have been on every one in the book,, until finally we tried Imuran. We added the new drug and reduced the Prednisone 1mg at a time, and when the dose got low, we started reducing .5mg's at a time. The flare-ups still occurred, but on a much, much slighter scale.

Not being exactly sure what Adcal is, I don't know
if you are taking immunosuppressant drugs or not, of course other than the steroids. Also, I don't know if you see a rheumatologist, internist, general practioner, etc. I definitely recommend you consult a rheumatologist if you haven't, and see if he/she can possibly do some trial and error with the drugs, and reduce the prednisilone by "baby steps".

It took a looong time to get down to a baby dose. I am not completely off, but am on 4mg of prednisilone and my body handles that very well with few side effects. Also, the low dose along with the Imuran keeps the Connective Tissue Disease/Lupus under control.

Good luck and I will think of you and remember you in my prayers!

Blessings!

Ann

 

[cad]

Hi Jaqui,
just wanted to say sorry you are having such a rough time and that i really hope things improve for you soon. It seems obvious to me that if you are that ill and unstable at the moment then you should be on long term disability. It's shame that your gp does not think the same as he does influence the decision.

I really hope thing get better, you have had some really good advice from the very knowledgable ladies here.

Take Care

Good Luck

Cassie

Cassie