New to forum

[Rose]

Hi all. I was diagnosed in March 2008 after suffering acute symptoms for 6 months. I say "acute" as I am sure that the terrible "gut ache" and other gastrointestinal problems that I suffered from for over 18 years and which was put down to Yuppie Flu (or hypochondria) were WG related. My acute symptoms were classic WG starting with a runny nose, hearing loss, painful joints and muscles. daily rises in temperature returning to normal in the evening and night sweats. Symptoms that became worse as time went on. In February 2008 feeling extremely ill, unable to walk because of joint pain and achilles tendonitis I was admitted to hospital. Microscopic blood and protein in my urine and a very rapid heart rate had been found when I was referred to a specialist. Within a few days in hospital, following x-rays and blood tests I think my doctor was pretty sure of the problem. As one of the nurses said "someone was listening in class" A fine needle biopsy of my lung was performed which could not confirm WG but was able to rule out cancer or TB. I then had a biopsy of my kidney which confirmed my doctor's suspicions. I was placed under the care of a nephrologist and commenced treatment of pulsed solumedrol and monthly IV cyclophosphamide x 6 . I responded well and was able to achieve drug induced remission after the completion of cyclphosphamide. The drug of choice to maintain remission was Imuran 100mgs daily (I could not take methorexate as I had developed drug induced hepatitis 3 months into my treatment) At first I seemed to tolerate the Imuran well but 5 weeks into the treatment I developed severe vomiting and stomach pains. I then started on Cellcept 1.5G daily in January 2009 and so far so good.
Today my kidney function remains around 50%. I occasionally get some roving joint and muscle pains and sometimes I just ache. Sangye's tip on Vit D has really helped there. My sinuses are back to almost normal which is such a relief and I dont have that awful "gut ache" that I suffered from for over 18 years. I am fairly fatiqued but can do my housework and shopping. My cellcept was recently changed to the generic because of costs (my insurance refuse to cover it because it is 'off label') I am back on the brand cellcept as my creatinine levels had started to rise. I am doing OK.....I could be better but I could be worse.
I do have a problem in that I have been having frequent UTI"S. Last week I had a cystoscopy done and I am told my problem is gynaecological which will almost certainly require surgery. I will see the specialist next week to confirm. Surgery is a concern at any time but with the WG and immunosupressants......... I don't have too much confidence as there are no WG specialist in SA as such, there is no vasculitis center and I have come across more than one doctor who has never heard of the condition. Yes, I am concerned.
I have been a "lurker" for some time. Thank you all for sharing all your experiences. I have learned such a lot and now that I have finally posted I hope to become a regular contributor to the forum.

[Sangye]

Hi Rose, nice to meet you. It sounds like it's pretty important to get the surgery done. Frequent UTIs can become dangerous. That can also cause the Wegs to become more active, as it wears down your body. And there is the issue of all those antibiotics.... You'll have to weigh all that with the risk of inducing a Wegs flare with surgery. There's always a chance that the surgery may result in you feeling a lot better than you do right now. Maybe some of the fatigue you have is secondary to the infections.

At any rate, a surgeon will understand the risks involved with immune-suppression and slow healing, even if they have no idea how Wegs works. If you had Wegs involvement in the area that would be a very different matter.

[Rose]

Hi Sangye, thanks for your input. My GP also feels that the frequent UTI's could cause big problems in the future especially with my CKD which is at the moment stage 3. I have managed to live to 61 years without any sort of operation but I guess there is a first time for everything. I will have my consultation with the specialist gynaecologist next week, see what my options are (if any) and hope that I decide wisely. On another note. In January my rheumatologist started me on Ecotrin 81mgs daily as he says people with WG are prone to clots, strokes, heart attack etc which I was already aware of from info gathered on this forum. Surfing sites on kidney disease I dsicovered that Ecotrin is a NSAID and these drugs should not be given to people with compromised kidneys. I discussed this the other day with my GP....he was aware of NSAID and kidneys but told me to continue to take it as it is such a low dose. What are your thoughts on that?

[drz]

Sometimes I read the drug inserts from my pharmacist. According to that info I should not be taking most of the drugs I am currently taking since they are either unsuited for someone with my many health issues or not compatible with each other. I believe the doctors are aware of these risks but the risks of not taking them are considered greater. For example, the insert for Imuran says not to take it if you have taken Cytoxan, well I think most of us on Imuran also had Cytoxan first. Maybe we are better off not to read this info since it just stresses me and I feel I need to keep taking all my meds anyway. I think we have to have confidence in our prescribing doctors and know they are trying to balance things the best way they can for us!

[Sangye]

Personally I don't think it's a good idea to take an NSAID unless you need it. I've never heard of a doctor putting a Weggie on NSAIDs to prevent clots, but I am pleased your doctor at least knows there is a risk of clots. Are you more at risk of clots for some other reason?

They can easily check for Wegs heart involvement with an annual echocardiogram. You might consider taking 2,000-3,000 IUs of fish oil a day. It's an anti-inflammatory and also a very mild anticoagulant. Lots of other good benefits, which you can google.

[Rose]

There was no reason for her to put me on Ecotrin other than as a prophylaxis. At the time I thought that it was good idea as I know that healthy people do take low doses of asprin routinely for this reason though I had never seen that drug mentioned on this forum. The reason I was surfing kidney disease sites the other day (where I saw the article about NSAID) is that my creatinine which had remained stable in a high normal for 2 years shot up a month after my doctor changed brand Cellcept to generic and I was started on Simvastatin and Ecotrin. Simvastatin has since been stopped because of severe muscle pains and the Cellcept has changed back to brand. Creatinine levels are now only slightly out of range. I usually do not research the drugs I am on for all the reasons that Drz said in his comment. However, after suffering severe thigh pain and weakness which interfered with my mobility and which I put down to WG only to discover 2 months later when I visited my doctor that it could be the Simvastatin. Could have saved myself a lot of pain had I been aware. Interestingly, also stated on the side effects of this drug is that serum creatinine levels can rise should you have the muscle pain side effect....got to do with damaged muscles releasing an enzyme called creatinine something.. Now think that was probably the reason my serum creatinine levels rose.