Oh bother - having a flare!

[pwc51]

It has all been going so well! It is 14 months since I was diagnosed. I had completed 6 months of Cyclophosphamide and then moved on to Methotrexate. All seemed well under control and Preds were down to 7.5mg. I was just about to start the reduction to 5mg but just before I got there I started getting severe joint pain again this week. Had an emergency blood test yesterday and saw my consultant at 5:15 tonight. Inflamatory markers were up and blood / protein in urine.

Back to Cyclophosphamide on Monday and 60mg pred from tomorrow. His proposal is to go onto Azathioprine after that. Hopefully we'll be more successful this time round.

[pberggren1]

I'm so sorry to hear this. Going back on the ctx and high dose pred can be very discouraging. I hope that your doc is monitoring you closely. My doc does all my regular blood work once a week to keep track of how the Wegs is doing on paper. He said that way one can usually detect when a flare is starting and be able to jump on it right away and possibly not have to use ctx.

[Geoff]

Like Phil has said, we are sorry to hear your news. If I can say one thing its not to get too downhearted. There was a time when as I moved away from my initial Dx I thought it was all plain sailing and that it was only a matter of time until I beat this disease up. That has proved not to be the case but I take solace from the doc who told me that he would rather I had a flare, which he could quickly treat, than to hammer my body with heavy duty drugs which would affect me in so many other ways.
Living with Wegs is like being on a roller coaster and we have to accept that. I have been on Azathioprine for the best part of 9 months now with good results. I have been reading your early posts and noticed similar syptoms to myself. I am sure you will get back on track.

[JanW]

Sorry to hear your news, pwc, but the GOOD news is that you saw your doc, immediately got blood work and are now getting the treatment you need. I hope that when the time comes for me (and I'm sure it will because the experts at the Symposium say that most weggies will flare at least once) I will be psychologically strong enough to jump on it, even when my emotions will want to say it's probably nothing.

[Jack]

The regimen of moving from Cyclophosphamide to Azathioprine to Cellcept was the one I went through and it took four or five years of ups and downs before finally becoming stable. The quicker everyone reacts to the flare, the shorter will be the backward step and eventually you should be able to go for a very long time without further major problems.

Don't be disheartened by the setback, I'm afraid it goes with the territory, but you'll get through it.

[Sangye]

Oh man.... I'm so sorry. Like the others have said, I hope the drugs lull that dog back to sleep quickly. Hopefully you won't have to stay on them for long.

[elephant]

Sorry you are going through this again. Keep us posted, we are here.

[pwc51]

Thank you all for your encouragement - I know I am not alone in this 'journey'. I am letting my frustrations get the better of me when it all seemed to be heading in the right direction! I guess this is the reality of WG. Hopefully we'll kick it into touch quickly as we have caught it fairly early (arguably not early enough to avoid the heavy guns again). I will try to post updates on progress as time goes on to add to the great knowledge base that is building here.

[DEE]

hope your journey gets alittle less bumpy soon DEEx

[Hammy8241]

Bummer...!

[pwc51]

I could not have worded my thoughts more succinctly than Hammy8241 has put it!!!!

[Kimbangu]

I think we've all got this in front of us mate. There seems to be an emotional roller coaster. I was diagnosed at the same time as you and I have been thinking about your post a lot today. It's like having a sword hanging over you-you'll get through. 60 mg of pred? - just keep out of that fridge Okay!

[Jack]

I think we've all got this in front of us mate.
Not all of us, around 50% so it really is just down to luck.

Everyone has a sword hanging over them, it is just that they are often not as aware of it as we are. ;)
Think of it as character building!

[eileenv]

Sorry to hear your having a flare and have to go back on the high dose of pred and ctx but looks like you have a good rheumatologist who's on top of things, take care.

[pwc51]

Fridge will remain firmly shut - well, at least between the times that I open it!

I have a rheumatologist who is always keen to hear from me as he has relatively few WG patients compared to his 'normal' rheumatology patients. I sense he is keen to ensure he is aware of any issues that may arise between appointments (as indeed this flare has) as this also helps build his knowledge base. I don't contact him too frequently but when key events / changes happen I will usually drop him a note to determine the significance. In this latest incident I should probably have contacted him a bit earlier but, as ever, there is a tendency to think it is not happening and the symptoms will go away. In this case they did, but then came back worse! The key symptoms being the roaming joint pain.

Despite his relatively low patient base he diagnosed my initial condition within 5 minutes of meeting with him for the first time (a diagnosis confirmed by subsequent scans and tests). I know, too, that he works with a couple of other rheumatologists when it comes to WG patients so the experiences are shared. He seems extremely competent in the treatment he prescribes - it is always carefully analysed and described. Plus, of course, I am able to do a sanity check by using forums such as this, reading WG medical papers and talking to members of my local WG support group - so, as best I can be, I am comfortable with the medication plans (bearing in mind that we are all different).

[eileenv]

Hi pwc5, I was intrested to read that you have a WG support group in you area i am in romford, and as far as i'm aware there are no support groups around here.

[pwc51]

Hi eileenv - the group is a more generic Vascultis support group but a significant proportion of those attending the Surrey group are Wegener's sufferers. Please try this link - Stuart Strange Vasculitis Trust (http://www.vasculitis-uk.org.uk/support.html) . It looks as if there could be someone local to you. They also produce an excellent newsletter which is well worth 'subscribing' to.

[JanW]

The 50 percent number that Jack speaks of seems like on that experts are well on their way to revising -- what I heard clearly at the Symposium is that most WG patients should expect at least one relapse after their initial remission.

But it is still all down to luck. And very few of us can't obtain remission at all (way less than 10 percent) so that's the good news right there too.

[elephant]

That sounds more realistic. Like any other autoimmune diseases, many of them flare continuously and have a hard time controlling the disease ( autoimmune). Why do I know this, I saw this continuously in the hospital.

[pwc51]

Elephant and JanW - thank you for the excellent feedback. That is most interesting and the 'less than 10%' figure is encouraging too, just hoping I stay out of that group!

[marta]

Total Bummer! My heart goes out to you - I know you'll get better physically but it's that emotional downer that I am sure is the worst. I've been feeling crappy for the last several days/week and it's always on my mind. Am I over reacting, is it something to be concerned about, should I give it a few more days to see if it gets better. I can totally understand where your head might be at. Take care and I'm glad you caught it and have brought out the 'big guns' - maybe you'll have to be in full on combat warfare for a much shorter time. All the best to you!!!!

[Geoff]

[FONT=Tahoma]. In this latest incident I should probably have contacted him a bit earlier but, as ever, there is a tendency to think it is not happening and the symptoms will go away.

So very true. I have to agree with you on that one. Denial is a real issue for me as I long to believe that Wegs has only a 'flimsy' hold on me. These last couple of months have made me realise it is better to shout early than keep it to oneself! Hope you have taken on board the reality check, but also all the positive thoughts from this forum:smile1:

[pwc51]

I have been on 60mg pred, up from 7.5, for two doses now and today I have been buzzing. It made me realise that I had probably been going downhill for some time but I really could not put my finger on anything until the joint pain came back in anger. I had been having joint issues for a little while but it was generally low key, more of a niggle than anything and, like most, I did not want to be considered a hypocondriac by reporting every 'minor' issue. The last blood test had shown most indicators as normal but I think I may have been drifting down even ahead of that. Something to watch for next time, should it occur again. I guess the key problem is knowing what the 'new normal' really does feel like as I don't seem to have a handle on it yet!

[Geoff]

I think you summed it up quiet succinctly with the word 'drifting'. If ever a word was more adept at describing Wegs,(especially when coupled with downhill) then I have yet to see it!

[jola57]

Yes, well Wegs has it that by the time blood tests show any changes we are in a full swing of Wegs flare. Be vigilant on how you feel and how your body is, not what the blood tests show.

[Doug]

I think you summed it up quiet succinctly with the word 'drifting'. If ever a word was more adept at describing Wegs,(especially when coupled with downhill) then I have yet to see it!

How true! =(^+^)=

:crying: