Weggies & Work

[JanW]

To add to what Jack said, I continue with the pain in one ankle even though my blood work shows a clinical remission -- however, after a short course of steroids (I don't take them as part of my WG treatment unlike many here) it improved quite a bit and my doc decided to up my mtx, which has really made a world of difference and proved to him (and me) that I not only know my body, but that this symptom was tied to my WG. I quite literally woke up one day with horrible foot pain, that has lasted a year now. I was diagnosed back in January. One thing that aided in my diagnosis and having docs take me very seriously is my saddle nose. Not something they see every day, or really ever. The only other times I have ever seen one (and I live outside of NYC in a city of 40K) was at the Vasculitis Foundation's symposium.

All of this is to simply say that it can take a lot to get to get the meds right to a dose that is effective but not toxic. I agree with Sangye that it's probably less likely that your dormant WG had a trigger and more like that the stuff they are saying that you had (in my case it was asthma) you in fact never had, and it was WG all along.

I will also say that my joint pain disappeared -- completely --- within a month of being on mtx, which was one of the first signs that the drug was working for me.

[pberggren1]

I just wanted to add that Ibuprofen is hard on the kidneys as well.

[Nancy]

Don't forget that Long term moderate to high dose Ibuprofen use can also result in High blood pressure or worse than that Gastrointestinal bleeding/ulcers....

[drz]

Hopeful - do not take Ibuprofen, it does not mix well with the other drugs we take. I am now using Tramadol and it seems to help, but I use the slow release type and started on a low dose. First time I tried it I went straight in on a high dose and had to stop because I did not tolerate it at all well.

I agree with the others that the joint pain can be an indicator of Wegs activity, but a lot of us seem to have foot pain in spite of the disease apparently being well controlled. I don't think this aspect has been investigated or documented yet. I've had every test in the book without finding what is causing it.

What drugs, herbs, supplements etc should we generally avoid when being treated for Wegener's disease? I used to take a number of supplements and herbs for diabetes symptoms before I was diagnosed with Wegener's. I know I need to avoid metformin and altace now but wonder what other drugs and supplements I should avoid.

My joint pain went away when I started treatment for Wegener's. I am still on 30 mg Prednisone and no joint pain has returned yet. I do have occasional cramps in legs and hands but don't know if this is related to Wegener's disease or some of the meds I am currently taking.

[elephant]

It could mean low potassium, calcium, magnesium. How often do the docs check your potassium level?

[jola57]

JanW, how much mtx are you taking? My left ankle is my biggest problem. The pain is constant but is seems everywhere not just the joint but the nerves and muscles around it as well. Many times it just gives out and the pain is so intense that I can only hobble on my right, simply can't put any pressure on the left. I am on 10mg mtx because of my liver tests.

[jola57]

drz, I remeber having cramps for a number of months before they finaly went away, It took 50 to 60mg pred and ctx 150mg before they went away. I learned very quickly for example not to stretch my legs in bed at night at all, I had huge cramps in my calf and toes. I also craved bananas and tomatoes which are high in potassium.

[Hopeful]

Hopeful, I'd bet my money that you never had pneumonia in the beginning...sounds just like Wegs affecting the lungs. ... Lung involvement typically progresses slowly, so it could take months to become obvious.

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. ...Two rounds of rtx have finally gotten the Wegs under control for the first time in 4 years, and lo and behold--I don't have the joint pain. It's possible that the mtx isn't strong enough for you. How experienced is your immunologist in treating Wegs?

Hi Sangye,

Thanks for the input. They did tests and I did have pneumoniasis aureus (I think I've spelled it right). Despite the fact that I had difficulty shaking the pneumonia, I seem to have difficulty catching the flu, colds, etc. People around me drop like flies and I have no problems. Go figure! That said I do have "mild scarring" of the lungs according to my last scan, and I have started coughing a little bit in the past 6 months. A little tickley in my chest and sort of breathless. I know I could be bleeding in my lungs. I'll raise it with the immunologist in a week or so.

I'm hoping the joint pain will go away soon. Blankets on my feet are causing me the worst pain problems right now. Kind of hard to avoid them in the winter. I'm doing 20 mg mtx once weekly and 10mg pred daily. When I first started the mtx the pain disappeared and I thought "Hallelujah" but it has reappeared and is holding a a steady level. The doc said if the mtx doesn't work, it will be rituximab or back to the IV higher dose of cyclo. My immunologist has treated 3 people that I know of - he has 2 offices and is in Canberra only 2 days a week, but is a Professor/researcher and is highly regarded. But I'm always on the lookout for someone better! Thanks for letting me know that the pain will go away. Now what about the 20 lbs I've gained???

[JanW]

Hey, Jola. I'm taking 17.5 mg/oral per week. I thought that 15 mg was the lowest therapeutic dose, but then again I don't take pred so maybe the dosing is different. I noticed a difference with the ankle first with the pred (as in it felt 90 percent better than it did before I took the medrol pack) and that was the reason for raising the mtx. I would say I've lost about 30 percent of that relief so will talk to the rheumy next time about perhaps bumping the mtx up again.

I never had constant pain (only weight bearing) and I probably haven't taken prescription ibuprofen for it since Feb/March (shortly before starting on mtx). I have had a LOT of physical therapy (2x/wk since May, maybe) and that has helped, although clearly there was a big part of it that was inflammatory that seemed to be 'cured' by that brief hit of pred.

[Sangye]

I am still on 30 mg Prednisone and no joint pain has returned yet. I do have occasional cramps in legs and hands but don't know if this is related to Wegener's disease or some of the meds I am currently taking.

High dose pred causes you to lose calcium and magnesium and potassium is lost through the pred-sweats. Unless you're taking a drug that depletes potassium (eg lasix, a diuretic), you can just eat a banana, orange or potato to replenish potassium. It's abundant in many foods. You should be taking a calcium supplement while on pred, and you can add some magnesium if needed.