janene

[janene]

Hi,my name is Janene.
I was diagnosed in March this year. My symptoms were really, really painful joints. I couldn't get out of bed. After being referred to a specialist , I was told I had this disease. I get that everyone is different and has a different journey(my doctors words) but I was wondering- how am I supposed to feel? My joints feel better but not great and I am always exhausted and often feel unwell. I take Methatrexate and 15mg of steroids. The medication has been a problem-lots of side effects and awake at 4am each morning. After working for the first 10 weeks I gave up and started using my long service leave trying to get well enough to return to work. How long before I feel normal again.

[pberggren1]

You will have to give us more info like meds and diet.

Sangye will be on here to nag you about seeing a Wegs Specialist.

Where do you live? How old are you? Married?

The 4 main Vasculitis Centers in the US are:

1. Mayo Clinic - Rochester, Minnesota

2. Cleveland Clinic - Cleveland, Ohio

3. Boston University - Boston, MA

4. Johns Hopkins University - Baltimore, MD

You need to be seeing a Wegs specialist directly or if you can't do that have your current Rheumatologist consult with one of the Wegs specialists listed with the Vasculitis Foundation.

[janene]

Sorry. I am new to this on-line chatting. I live in australia. I am 53 years old. I woke up one day with sore fingers. 2 weeks later sore fingers and feet. Thought I was just getting old!! When both my feet and hands had such sore joints I couldnt use them, I went to my local doctor. He told me I probably had arthritis. Sent me to have x-rays on them and did blood tests. He then sent me to a specialist. By the time I got to the specialist i had sore joints in all of my body the pain was unbelievable. My specialist sent me for a whole body MRI and a ton of blood tests. This whole saga took about 12 weeks. The diagnosis was Wegeners. My specialist put me on 20 mg pred and 5mg Methatrexate and sent me to a kidney specialist. Apparently some 'Protein' was obvious but a wait and see approach was called for. I have not responded to the pred. I became agitated, angry,can't concentrate,can't stop eating etc.. and had a sore oesophagus and tummy so he reduced it. I am currently on 15mg. pred and 20 mg methatrexate(makes me nauseus and flat), I am a primary school teacher . Initially I took heaps of pain killers and rested in my breaks at work. But this term I have taken the term off as I find work almost impossible because I can never be sure what my days will be like. Some days I am really tired or just feel unwell or my joints are so sore its hard to get around. So when I stumbled on this forum I thought it would be great to find out- Is it normal to feel like this? My specialist says it will take longer to get it under control because I have lots of side effects from the drugs.

[jola57]

Janene, my symptoms were very similar, I am also 53. It was 3 and 1/2 years ago when I was diagnosed. I have been on chemo and pred ever since. Your doctor is right, this disease is different in us all. The tiredness and wrung out feeling is universal to us. Read some of our introduction posts to see symptoms and drug effects. Eating is part of prednisone and nothing can be done try to accept it and deal with the fallout at the end. This is somethig we all go thru. Other than this, welcome to our little (and getting bigger) group.

[pberggren1]

No appologies neccessary Janene.

I don't think you are in remission with continuing joint pain like that. And I don't think that the Methotrexate is strong enough to put the Wegs into remission. The 2 big gun drugs for WG are Cyclophosphamide ( Cytoxan ) and Rituximab ( Rituxan ). I think you may need to be on one of these to get things better for you.

Are you on a stomach acid blocker? If you are on any amount of Pred you need to be on an acid blocker because the pred increases the stomach acid and causes acid reflux and can cause bleeding in the stomach. I also think that 15mg may be too low a dose for just being diagnosed 2 months ago.

There are others on this site that are from Australia. Andrew, who is the Administrator of this site, is from Australia. I would suggest e-mailing him and he might be able to get you in touch with a Wegs specialist in Australia.

Take Care,
Phil Berggren

[janene]

Dear Phil
thanks. I sent andrew an email. My doctor gave me something for my stomach and the pain disappeared. if andrew can recommend someone I will get a second opinion on disease and medication. at least then i will know if i am on the right track!!

[pberggren1]

You are very welcome.

We are all here to help one another especially new people such as yourself.

[elephant]

I agree with Phil and getting a second opinion is important. If your spilling protein, your kidneys need to be watched carefully. Need to see a kidney doctor often and get your urine checked out every two weeks. That was recommended by my Wegeners specialist, because I had a kidney transplant and this disease is so sneaky!

[JanW]

Yep -- you need to keep getting that urine checked. I was diagnosed in January of this year and have been on 15 mg of mtx since mid March (no steroids). Since that time my joint pain (never very severe, but still there everyday) has completely eased. I mainly have problems with my ankle with may be partly mechanical and partly WG. However, my docs indicated that it could take up to six months for the full effects of mtx to become known, and you are not on a particularly high dose and you have been on it for a short time. Phil is right, your docs may need to try ctx or rtx at some point, but may be also giving the mtx a decent chance to work...I'm not sure that all agree that mtx/steroids combo can't put WG into remission, whether drug free or drug maintained. I think that there are as many variables in how people respond to the meds as in how they respond to the disease.

[Sangye]

Janene, wow that is exactly how my Wegs began, down to beginning in my fingers. I didn't get it diagnosed as quickly, though, and mine turned into lung hemorrhaging after 8 months of joint pain.

I agree with the others-- you definitely need a doc who knows Wegs. Your current doc is not doing you any favors by reducing the pred because it makes you angry, unable to sleep, and all the other symptoms you listed. I'm sorry to say those are typical side effects of pred and must be managed. The fatigue and variable level of function you describe is very typical for Wegs, especially when it isn't being controlled. If you undertreat Wegs, it progresses and can kill you. It can do lots of permanent damage meanwhile, and some of it occurs silently, without symptoms.

Take home message: get a Wegs doc asap.