Has anyone else had inflammatory incidents as a reaction to ending their steroid treatment?

[LyndaGould]

I was diagnosed with Cerebral Vasculitis in March 2008 and having had the usual steroid and immunosuppresant treatment, I have slowly improved. Last summer I started a final reduction of steroids and I took my last steroid on 9th Oct 2011. What I have experienced during this process of reduction and since finishing in Oct, is that I have had a series of inflammatory incidents primarily affecting my elbow, shoulder, knee and I now have tendonitis in my left thumb which is very painful. Both have required physiotherapy but the tendonitis has not really improved despite taking an additional anti-inflammatory drug. The Dr says they are totally unrelated to the CV or coming off steroids. Before I get in touch with my consultant though I am wondering if anyone else has had similar or other unusual reactions to coming off steroids?.

[PaulBingham]

Hi Lynda,

I have had Wegeners for 5 years. One of the always with me symptoms is joint pain/inlammation of the joints.My consultant says that it is part of the WG and quite frankly I accept this as it is almost certainly true

I find that it worsens as I reduce my steroid dosage. For example I have been relatively OK over the last two years while my dosage has been 7 or 6mg daily. However,i went down to 5mg at the beginning of December ,as a result of which my pains have been a lot worse. At the moment I am crippled with two swollen knees.

SO last week I raised my steroids to 6mg and am awaiting the outcome.

My cosultant is quite happy for me to regulate my own steroid dosage as he accepts that my prime objective is quality of life which included not suffering full time with joint pains.

A little extra note:: My joint pains roam all over the body from knees,hands,wrists,shoulders etc. They are not particularly focussed and are quite happy to attack anywhere.

What discipline is your doctor. It seems wholly connected that your inflammation derives from the steroid elimination.For him to say otherwise is challengable although of course doctors dont like to be challenged as they always know best !!!

All doctors try to get patients off steroids because of their long term impact on the bones BUT ,in the end you are a very important part of any decision on this.

Good Luck

Paul

[LyndaGould in reply to PaulBingham]

Thanks Paul,

I always get the same reply - from a Rheumatologist I saw, my Consultant who is a Neurologist, my GP's and Practice Nurse... they all say that the pains are because the steroids have been masking them and this is normal joint pain for someone my age - I'm 52. It does frustrate me at times because they hardly listen long enough before they say that the pain is old age...

[John_Mills Volunteer]

Hi Lynda, different people respond differently to steroid reduction. When you take artificial steroids, your body's natural production of cortisol is suppressed, and the cortisol producing tissues in the cortex of the adrenal gland shut down.

As the level of artificial steroids is reduced, with luck and a fair wind, those tissues will start up again and make natural cortisol to cope with the various stresses that are placed on your body. The natural baseline level of cortisol is equivalent to about 7.5mg of prednisolone. So once your pred dose is reduced below 7.5mg your body should begin to make up the difference. Unfortunately, this does not always happen, or if it does, the production is insufficient. When this happens in normal healthy people, it is called Addison's disease. It is possible to establish how much cortisol the adrenal gland is producing. If it is insufficient, you will have the problems you describe. Cortisol is a very important hormone which controls many basic body functions, including controlling the body's inflammatory response mechanism. Natural production goes up and down to suit the physical stress that the body is having to face from injuries such as cuts, and bruises, infections and the body's repair systems as well as coping with non-physical emotional stress.

If your vasculitis is still rumbling in the background, as is often the case, it will be constantly "using up" some of your limited supply of natural cortisol, leaving little left over to deal with inflammation in joints etc.

So don't be fobbed off. It might be that your vasculitis is still subclinically active or that you are just not able to make enough cortisol on a daily basis. Many people who have been on long term steroids seem to find that 1-2mg of pred daily help to keep the aches and pains at bay. Having read the above, you can understand why.

[LyndaGould in reply to John_Mills]

Thanks John, I had my cortisol levels measured back in November and they were normal - never got any specific numbers though and I am thinking of asking my GP to do the test again. I get a bit paranoid though about every new ache, pain or inflammation especially when my CRP and ESR have been higher than my usual readings. Both of the GP's in my practice who've read up on CV say everything is fine - but I still fear that the inflammed tendons in my knee and now my wrist are connected somehow. I received a letter today from the hospital saying I'm to be assessed by a Rheumtologist for a steroid injection in the tendon at the end of this month. Maybe a chat with the Rheumatologist and a call to my Neurologist might bring some more clarity? Last thing I want though is to become a hypocondriac but it is so hard to determine what is normal and what is related to the vasculitis...

[Skipper]

Hi Linda, I have had WG since 2007 and came off steroids 18 months ago. The result was severe aching muscles & joints. My doctor said it was inflamatory arthritis but I then saw my renal consultant who said I was having a flare and put me back on 10 mg of pred. Within 36 hours all my aches and pains had disappeared. I am now down to 3 mg of pred and so far so good but a bit apprehensive if I am taken off them completely.. All the best

[LyndaGould in reply to Skipper]

That's what my GP said too - that the sore joints might be arthritis but the inflammation is totally separate. All of the professionals say the same thing that the steroids masked underlying conditions - yet everytime they say it I'm thinking of everyone on these web forums who have had similar experiences to me.I can't believe that someone in this field hasn't connected the experiences of patients, recognised a pattern and come up with a different conclusion about the cause of the pain...Thanks for your good wishes Skipper.

[patsy]

I can tell you coming off steroids does cause joint pain!!!! this can be proved by simply going back on a low dose of steroids. I went through terrible joint pain when I came off them, I could not wait to be steroid free I wanted rid of the blessed things , but I was so glad to get back on them on the advice of my consultant and he informs me I will be on them now for a very long time.

Please speak to you consultant, you have to live with the pain not him. This illness takes enough of your life at least get a little bit of pain free quality out of it.

Patsy

[LyndaGould in reply to patsy]

Thanks Patsy, I really celebrated on the day I stopped taking them but now have had days when I've been so close to opening the bottle again. Yet I know that being on them isn't good for me either so it is a real catch 22.

[Galaxy2]

When I was first trying to reduce my dose of steroids I came down from two doses far too quickly and my symptoms returned but around the same time I completely ruptured one of my achilles tendons. The doctor at A and E told me it was quite a common injury when people have been on steroids as steroids can weaken tendons. Since this I have had problems with tendon related pain which is pretty much widespread, my specialist told me that as I also have sjogrens this is what would have caused my tendonitis and taking steroids just made the problem worse. I personally think the steroids have had an adverse effect on my tendons as I have never suffered like I have since taking predisolone. It wasn't that long ago that I was running 8k a night and apart from a little bit of stiffness the next morning never had a problem.

I do know we are of course all different and are effected by drugs in different ways but thought I would share that with you.

Jenny

[milliewin]

Lynda I too was diagnosed with have Cerebral Vasculitis in 2008 and managed to come off steroids about 2 years ago and staying on immunosupressants and occassional steroids for chest infections, however I have now been diagnosed with an inflammatory arthrits like Skipper. I have a predc injection now and again but the Rheumatologist has put me on Methatrexate for the inflammatory arthritis which seems to be working as I have had very painful joints. I still get them but it definitely helps? I guess due to the time delay it wasn't related to coming off the steroids but who Knows!!!

All the best Sarah

[LyndaGould in reply to milliewin]

Hi Sarah, I have wondered about inflammatory arthritis since I can see some of my joints visibly swollen at times - especially my hands. My bloods are showing some inflammation going on but noone is sure what it is? I've also started having problems with my liver although my neurologist doesn't think it is related to the CV. It is so hard to know what is associated with what eh? Thanks for your reply. Lynda

[milliewin]

Hi Lynda, yes its impossible!!

it is my hands and also elbows that seem to be affected the most, my inflammatory marker is still raised but as the Rheumatlogist cant decide what is going on so I think they just call it inflammatory arthritis. She has been great and I have had x-rays, ultrasound etc. She first put me on hydroxychloroquine and then I had to come off the Mychophenolate so she could put me on Methotrexate and I have a prednisolone injection when I see her in the clinic. I have only been on Methotrexate for about a month now and do feel an improvement but that still coincides with the pred injection? who knows. It is something worth considering as it sounds similar to my symptoms

Best wishes

Sarah

[jolaine75]

Hi Lynda,

I was diagnosed 1 year ago as having PMR and was advised to be put on steroids starting at 20mg, ,with view to reducing them a\s time went on, the Rheumatologist at that time said that it would take anything from 1-3yrs before I would be completely free from the Steroids, last December, I was then informed that I should go back to the hospital to see a rheumatologist to re asses my case, I new Rheumatologist , was appalled that I had been put on steroids and that I would find it very hard to come of them, as some people have to take them for life, he then said that he though I had Fibromyalgia and this conditions does not respond to steroids, and another thing he told me was that with PMR you do not have pain!!!!!!,he then said that I should reduce the steriod 1 mg per month, I am now on 7mg next week it will be 6, and I am have lots of pain in my joints lasting all day, The Rheumi said that I would be experiencing pain that I have never ever had in my life,and it will get worse as I reduce the steroids, and when I asked him as to what I could take for the pain, his response, was "He does not do pain" if that bad I should find a pain clinic

I have now applied for a 2nd opinion as I am really confused as to which of the diagnosis I have.