Recenlty diagnosed with a couple of questions:

[TOBEY32]

1. I'm experiencing nueropathy (numb feet). Dr.'s can't seem to tell me whether it's coming from the "Cy", the "Pred", or the disease itself.

2. If I eat breakfast prior to taking meds (two 50 mg Cy, one 20 mg Pred) is there still a need for Prilosec (an antacid)? I also take an anti-depressant, an iron, and a high-blood pressure/1 each - all in the morning, all at once.

3. I've started back on several vits/supps I was taking before all this, so I'll ask this in reverse: Does anyone know of particular vits/supps that one should NOT take because of drug interaction?

4. I am being seen by a lung dr., a kidney dr., and my regular internist, but no rhuemetologist as no local one accepts sliding-scale (no insurance). How important is it for me to keeping looking? I don't feel comfortable right now making any of the others "THE" doctor.

5. Though not as often as before, I experience chills that come and go. What's that about?

Thanks much for any info/feedback...

David

[pberggren1]

I think you should take an acid blocker even with 20mg of pred. Everyone is different but some even need it on as little as 2mg of pred.

One should not take herbs like ecenacia or ginseng that boost the immune system. I take a calcium supplement with vitamin D3 and Strontium.

To get to the point: You need to have a Wegs specialist overseeing your case. The best option is to go to Mayo Rochester, Cleveland Clinic, Boston University, JHU in Baltimore, Chapel Hill, Salt Lake City, UCSF. All these centers have Wegs docs in the vasculitis clinics that are well known and respected. You need the best possible care with this disease.

It sounds like you are not in remission yet.

Tell us more about the supplements you take and the symptoms you have had and have now.

Welcome to the Forum David.

[Sangye]

You definitely need an acid blocker while on 20mg pred.

[elephant]

Welcome David. Ditto to what Phil and Sangye said. We are here for you.

[renidrag]

Welcome David: I always thought the neuropathy came from the ctx. My toes and toe nails turned gray and no one seemed to think it a problem. along with the tips of my fingers. The swelling in my feet has gone down, but some of the numbness and rash remains. A neurologist said he could give me a drug for it and it may help, side effect of weight gain, so I told him I would live with it. I was diagnosed 8/09 treated like everyone else, was pred free 2/10 and drug free 6/10 and still in remission. Still dieting......................................
Dale

[TOBEY32]

1. Re acid blockers: what is the sign someone needs to be take one with their meds - stomach upset? I've heard removing all acid from one's stomach is not good?
2. Re a Weg's doc: Not working and having no insurance right now, I'm not sure I have the option of going too far from home for add'l help. Can't imagine them seeing me for free anyway. I have heard of a doc in OKC (anyone by chance have his/her name?).
3. Re vits/supps: I take beta-c, b-complex, c, e, selenium, calcium w/ mag & d. There are still a couple more I'm wanting to incorporate. Another Q: for those taking vits/supps, do you allow some time before taking them after you've taken your meds?
4. How does one know he/she is IN remission?
5. So many questions! Does anyone out there talk via phone (don't have a home computer just yet)? It might be an intrusion to ask...

[Sangye]

On acid blockers-- yes, they are terrible for your health under normal circumstances and actually do exactly the opposite of what is needed. However, prednisone greatly increases stomach acid to levels that are quite hazardous for your gut lining. You can damage the stomach lining within a matter of days--sometimes permanently. You should not mess with this or wait for symptoms in order to take an acid-blocker. Damage can be done silently, and by the time you do have pain you might have done irreparable harm.

[ArlaMo]

I actually had neuropathy in my left foot before I was diagnosed, so before starting any of the meds. It really never got any better (have had it over a year now.) I've been off ctx since early March and no improvement. I have always thought it was a symptom of WG and not due to any medications.

[Sangye]

Re a Weg's doc: Not working and having no insurance right now, I'm not sure I have the option of going too far from home for add'l help. Can't imagine them seeing me for free anyway. I have heard of a doc in OKC (anyone by chance have his/her name?).

It's so upsetting to me to hear that lack of insurance is keeping someone from getting proper care. This country is medieval in that regard.

I suggest you call the VF and ask if there are any VF docs close to you. You do need a rheumy to oversee your care. It sounds like you're gonna have to travel a bit outside your local area to find one who will work with your financial needs.

Since you're not working you might qualify for state medical assistance. A major teaching hospital/ center is likely to accept it and you can find much better care there. They'd still need to consult with a Wegs specialist (VF doc), but doctors in teaching hospitals are much more willing to do that.

[Hal]

[QUOTE=TOBEY32;41756]1. I'm experiencing nueropathy (numb feet). Dr.'s can't seem to tell me whether it's coming from the "Cy", the "Pred", or the disease itself.

I too have neuropathy in both feet. Mine went numb around the time I was really sick last summer, before I started the Cytoxan. I therefore think it is a result of the disease, not the meds. My understanding from the Neurologist is that nerves in my legs and feet were damaged by the Wegener's, hence no (or limited) electrical pulses can travel up to the spine. If you can manage it, getting in to see a Neurologist to get a Nerve Conduction Test done might help answer this question for your particular case.

Good luck and take care.
Hal.