Is this the norm or a flare?

[pwc51]

I was first diagnosed almost 4 years ago. One of my many symptoms at the time was excruciating pain in various joints that moved around but was usually only prevalent in the evenings. I have been through the cycle - CTX, flare after 15 months, CTX then RTX (1 course of 2 infusions that worked brilliantly). For the last two years I have been on MTX and Pred, besides the other cocktail of supporting drugs. The Pred has been tapering until I came off it completely last week (hooray!).

Just before the final taper of Pred I started to get the occasional pains - they felt slightly different to those I had the first time around, generally not as intense and a somewhat different feeling (hard to explain but nevertheless pains at various joints that move around). Aside from these pains I feel really good, none of the other symptoms I had before and my blood tests are not showing any elevated markers, in fact they are the best they have ever been.

Leads me to the question is this the norm and I just get on and live with it or is it some kind of flare? My rhuemy has seen me a couple of times after I have had a couple of these pains but cannot determine the cause. I am still on MTX and a few other drugs.

As I have not had these pains since diagnosis (and briefly at the flare) I am wondering on a couple of other fronts if it is simply an adjustment to the medication change or if I just need a bit of Pred to keep them at bay? Any views welcome - thank you.

[drz]

Do the experts call you in a drug induced remission? Full or partial remission? Any other residual symptoms like excess mucous, nasal bleeding, coughing etc?

[Dirty Don]

As long as your numbers are good/normal, I would look to other possibilities knowing that while pred has done its job, it also masks other items such as arthritis, etc. Just a thought...good luck.

[pwc51]

Thank you for your answers.

drz - Nothing specific around remission - I view it as drug induced but not really considered if there was a partial option! There is slight nasal bleeding but I put this down to the aftermath of a cold / flu.

Don - interesting possibility - I have another blood test next week so hopefully I will see waht pointers there are, if any.

[Psyborg]

Seems like some of it is "the norm". I too have some residual, but way less pronounced pain. I can now tell the difference between pred withdraw symptoms and flair symptoms. But I do get some random mild (comparatively) joint pains. Not completely off pred yet though. I feel your pain...as it were

[Alysia]

Hi,
I have various kinds of joints pains. I first had arthritis when I was 17 years old. maybe it was already WG then because I had also strange sores and ear problems. since then my joints aching here and there from time to time, for example when the weather is changing (I can tell it is going to rain). The important factor for me is if they are not only aching but also red and or swollen. then I know it is WG. and then I take more pred. the blood tests can be o.k. in this state and still my doc tells me to elevate the pred.
walking every day for at least half an hour helps me to reduce the pain and to feel the joints moving more smoothly.

[pwc51]

Thank you all for your input - I try to walk regularly but as I work fulltime getting the daily activity is difficult. I do however walk reglalry at weekends - usually between 4 and 8 miles.

[kelly]

I had the same thing happen to me I stopped taking pred in jan of this year I was going to go back on it I also thought I was having a flair did blood work it came back normal like you it's the best it's been I still get the odd pain must be age weather related or from the gym every time I get a pain I wonder is it coming back anyway I'm glad I didn't go back to the pred still on mtx feel awesome and normal I think

[Barbara N]

I think we can all feel each others pain and it really helps to know you are all out there and are willing to listen. Sometimes that is all it takes, someone to listen and understand. Most people can't begin to understand what we go through. I wish none of us were in this position though. I wish remission for all of us.

[pwc51]

Latest update - the pains increased and continually move around. Mild rash is developing on my lower legs. A blood test a few days ago is bad with the markers leaping up - trying to see my rheumy but he has gone on holiday! ..... watch this space for further news!