Recent Diagnosis

[Sajo]

Hello Everyone,
I starting getting sick October 7th 2019. I thought I had the flu. On the 9th I noticed a skin ulcer on my left foot. The morning of the 10th my left groin swelled up. At this point I went to the doctor. I was hospitalized that afternoon. An ultrasound was done on my groin. It showed an abcess. At this time I also developed a bad cough and my oxygen level dropped. Antibiotics and Prednisone were prescribed. Morphine was prescribed for the pain in my groin. I was there for 5 days. Things were getting better. I felt pretty good. 4 days later it flared up again and I was back in the hospital.I also started have pain and tingling in my feet and legs at this time . My doctor contacted a rheumatologist. At this time I was prescribed Plaquinel with my Prednisone. An appointment was set with the rheumatologist . Now the blood tests began. The quickest I could get in was Dec 9th. The rheumatologist looked at me and diagnosed me with Wegeners. He stated that I needed to start Cellcept and Rituxan right away. The order was sent in yesterday. Im just waiting to get my first treatment. I am scared , angry and uncertain all at the same time !

[Pete]

Hi Sajo

Welcome to the club. It sounds like your rheumatologist is working aggressively to get the disease under control. Rituximab takes awhile (4-6 weeks) for full effect. Cellcept acts a bit faster. Are you still on prednisone? That should help you feel better in the shorter term.

The good news looking forward for you is that the disease is treatable. There is a good bit of research into newer treatments with fewer side effects. With effective treatment, you could return to a lifestyle that closely resembles your pre-disease state. A healthy diet and some exercise will help.

Feel free to ask questions. There are a lot of experienced people here.

[Dirty Don]

Welcome Sajo...you picked the right place to ask, vent, and give back for Wegener's. Your symptoms are similar to some I had on my 2nd flare, the pain, tingling, etc. First attack was on lungs and sinuses, survived that to get to the next one! LOL Sounds like your docs have you on a good track. Don't know where you're going for help, but getting experienced rheumy with an understanding of how this disease works is absolutely the best thing you can do. There are many clinics/hospitals such as Mayo, Cleveland, Hopkins, etc. which deal well with this disease. Hope you can at least consult with one of the biggies if not go there. Also, anger, etc. are typical reactions and you will get thru them as you learn more about the disease. Best to you and happy holidays! Did I just say that??? Getting oldER!!! LOL

[Sajo]

Thanks for the welcome Pete. I am still on Prednisone. They started me on 80 and now its 40

[Sajo]

Thanks Don for the welcome. I appreciate the posts. I dont feel so alone anymore.

[Masha]

Hi Sajo,
Pete and Don said it well. Find a great doctor and it is treatable.
It seems like there is no end to where this disease hits. Your case of the groin is the first I heard. My doctor once treated Wegeners of the breast. Mine rears it’s ugly head in my mouth, tooth loss sores, etc. I was diagnosed three years ago, and went kind of loopy when I first heard it.
It is normal to have it stir your emotions up.
Stay with this site. It is full of many kind people, who have been there and done that. We aren’t in place of your doctor, but we are here to share and support.
Masha

[Sajo]

Everything was finally worked out with my treatments . My insurance , get the drug on order etc. I start my first Rituxan dose tommorrow. Any advice on what to expect?

[Pete]

Sajo

For me, getting rituximab is pretty much a non-event. You’ll get a big dose of steroids (usually solu medrol), some Benadryl, and some Tylenol before they start the rtx. They start very slowly and gradually increase the flow. If you notice anything untoward, tell the nurse. They’ll stop and see what’s happening and make adjustments. My infusions last 4+/- hours.

After it’s over, I’ll be a little restless that night and a little lethargic the next day — side effects from the steroids and benadryl. After 36-48 hours, I’m back to normal.

[drz]

Everything was finally worked out with my treatments . My insurance , get the drug on order etc. I start my first Rituxan dose tommorrow. Any advice on what to expect?

It will probably take several hours so bring along some thing to read or help you pass the time.

[Alysia]

Welcome to the forum.
I hope your rtx treatment went well.
Please consider that being on high pred can cause us more anger and being more emotional. When you reduce the pred, do it very gradually.
I've also never heard about wg in the groin. Maybe the pain was not wg related ?
Did they take biopsy from the ulcer in your leg ?
I hope you are getting better.

[Sajo]

I made it through all 4 treatments. I had my 1st on Dec 30th , The 2nd on Jan 6th , The 3rd on Jan 13th and tjhe 4th on Jan 27th . The first two treatments weren't too bad. Felt crappy next two days and then not too bad. The third treatment was crazy. I felt like crap for 4 days. On the 3rd day I swore I was loosing my mind ! The doctor then decided I should have a week off from the treatments. I didnt feel too bad during the week off. Got the last one dome on the 27th. Same thing felt like crap for 4 days. Felt better afterwards. Over did it on the 1st and 2nd of Feb. Felt like crap for 3 days. Feeling better better today. I still have the severe pain in my feet and left leg. The doctor wants to reduce the Prednisone to 10 ml a day. I have reduced it to 20 a day at this point. It seems like I tire very easily. I dont know when the doc will start with the Cellcept. I hope I get to feeling better soon !

[NatriceRomeo]

Sajo,
Hope you are starting to feel better. Hopefully you have better luck on cellcept than I did! I find tapering on prednisone just plain sucks!
Natty


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