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!

[mishb]

:ohmy: :sad: :crying:

I'm sorry to hear that your markers have gone up........and how dare your rheumy go on holidays, when you need him :predrage:

I hope things start to improve quickly

[Dirty Don]

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!

Funny...but you're definitely flaring...darn...get in soon, and if the 'idiot' doesn't get back soon, get to an ER! Best to you!

[RudiK]

Pw, does your Rheumy have a back doc you can see? If not, I would not wait for the Rheumy to come back to work, I would go to the ER, get taken care of.
Best of luck.

[annekat]

Ooh, that does sound a bit flare-ish! I had a bit of a flare this winter but have gotten over it with an increase in my MTX and pred. I suspect my MTX dose, after having switched from CTX, was too low to begin with... only 10mg. Now at 15mg and hope to convince my doc to let me stay there to avoid future flares.

I've only had a very slight rash on my forearms when flaring. But I recognized it as the WG rash.

I've had the joint pain, but not at all since treatment. I never had red or swollen joints and didn't notice it moving around, really. So not typical Wegs joint pain, I guess, and less severe than some of you. Had been tested for RA in the past but with no positive results.

Anyway, good luck, pwc51, in getting it looked at and dealt with soon!

[pwc51]

I managed to see a doctor who seemed to know what he was doing. He agreed with my thoughts that the increased pain etc was a flare (slight?) - as a holding measure he has put me on pred (30mg) but thinks when my rheumy is back next week he will suggest going through RTX infusions again.
Feeling so much better after only 1 dose of pred - it is amazing stuff!
More news soon .....

[Jaha]

I do hope you are feeling much better, it is amazing what raising the preds will do. Wish all the best for you!:thumbsup:

[annekat]

I agree that pred is amazing stuff. It is the drug we love to hate. I've always kind of liked it, with some reservations.

[pwc51]

The pred is fantastic - I did not realise how bad I was feeling before I went back on this! It obviously creeps up (runs you down) without you noticing! Seeing my rheumy on Monday but he has been working away already and I have dates for my next two doses of RTX - fantastic news (1st and 15th May).

[marta]

Peter, sorry to hear this flare is going on. Let's call it a smoulder and it's not as ominous as a full on-go to the hospital and hang out there for days - kinda flare.

I hope that they don't keep you on the pred for too long and I'm thrilled to hear that you have RTX booked. Nip that baby in the bud.

All the very best to you - I think those lower pred taper moments are super tricky and individual... I hope that this is not the cause of the flare, ooops, I mean smoulder.

xxx
m

[pwc51]

Thank you Marta - I like the style!

It is very hard to say what the trigger was - I had been stable on 5mg for some time and actually the pains had started before I began the final taper. It suggests I might have needed a higher level, say 7.5mg all along. The taper had been very slow - almost 2 years to get to zero. Mentally / psychologically I felt so much better on the lower doses but once teh pains returned I realise that I must have been going down in other respects. Oh, the joys of this wonderful condition! At least the sun is shining today!

[pwc51]

RTX round 1 today - went without a hitch, just took time. RTX round 2 in 2 weeks. Let's hope it is as smooth.

Pred now 20mg step down to 15mg in 2 weeks and the 10mg 2 weeks after that but I think my MTX may go up to 20mg injected - oh the joys......

[pberggren1]

I hope you are in remission soon.

[pwc51]

Thank you Phil - if it works like last time I will be in the medication maintained remission fairly quickly. My concern is how, if ever, I can get to a stable nil medication state or, and I guess this is more likely, find the right medication level that maintains the remission and stops this flare / remission cycle.

Peter

[pberggren1]

I never worry about getting med free now. I just take one day at a time.

[drz]

I never worry about getting med free now. I just take one day at a time.

My doctors have reassured me that many people who had organ transplants take drugs like pred and azathioprine for the rest of their lives at similar dosages and suggest that I will probably do so too. The hope is like Al said that some new research break through will discover some workable cure that may change this for all of us. Until then maintenance meds and hope flares are few and mild and easily treated. But like the transplant recipients we are much more likely to die from an infection than a serious flare of GPA.

[annekat]

My doctors have reassured me that many people who had organ transplants take drugs like pred and azathioprine for the rest of their lives at similar dosages and suggest that I will probably do so too. The hope is like Al said that some new research break through will discover some workable cure that may change this for all of us. Until then maintenance meds and hope flares are few and mild and easily treated. But like the transplant recipients we are much more likely to die from an infection than a serious flare of GPA. My doc is very much into having me on as little drugs as possible. I think I flared this winter because I was on too low a dose of MTX. He doesn't talk about infections so much as potential liver damage or whatever the risks are for a particular drug. I'm sure his goal is to get me off the meds, but I'd rather stay on them at some minimal level if it keeps me functioning and to avoid flares.

[Alysia]

RTX round 1 today - went without a hitch, just took time. RTX round 2 in 2 weeks. Let's hope it is as smooth.

Pred now 20mg step down to 15mg in 2 weeks and the 10mg 2 weeks after that but I think my MTX may go up to 20mg injected - oh the joys......

Hi,
your treatment is very similar to mine. Im a month after the second RTX, for my first time of it. I started feelling better only last week, and it is hapenning very slowly. Im almost "measuring" the amounts of nose's "stuff", the numbers of coughs, the hour of the day when Im totally finished, and I can see, little by little, some improvement. not enough yet...
I hope it will work soon for you. remmision is waiting to come.

[drz]

My doc is very much into having me on as little drugs as possible. I think I flared this winter because I was on too low a dose of MTX. He doesn't talk about infections so much as potential liver damage or whatever the risks are for a particular drug. I'm sure his goal is to get me off the meds, but I'd rather stay on them at some minimal level if it keeps me functioning and to avoid flares.

Damage from GPA to organs from the drugs we take is a valid concern as I have taken many of those drugs already for my diabetes and already have significant kidney damage from both Wegs and diabetes. My monthly labs monitor both kidney and liver function and so far they seem stable at present levels. Another Weg attack in the kidneys would be a disaster for me so taking the maintenance drugs of 175 mg azathioprine and pred at 5 mg seems a much lower risk for me according to my doctors. They are uncertain if this will prevent flares or just hopefully make any flares milder so they are easier to control before they do any significant damage since the research on this has NOT yet reached any consensus. I suspect any results of such research will also vary a great deal according to individuals health history and age and also some other yet unknown factors

[annekat]

drz, I agree that we should be concerned about the damage these drugs can do, and not take them lightly. But my doc has consistently had me on lower doses that are recommended for my body weight, according to what I've seen on sites for the various WG specialty centers. I feel he may have prolonged my treatment by doing this, made me be on CTX longer than I would have if at the normal dose, etc. I don't know. I realize that I don't understand these drugs as well as doctors do. Somehow or other, he got away with it, as I'm now doing pretty well, feeling the best I've felt since dx. But I'm still on the meds, and I'm afraid, for example, that if he makes me go from 15mg./wk. of MTX back to 10mg., I'll have another flare. Both of those seem like pretty low doses, but the 15mg. seems to be working really well.