Rash?! Sun, drugs or something else??

[Wengle82]

Hi all,

I’m being treated for GPA with rituximab infusions and steroids, currently 20mg a day down from 60mg a day.

I’ve developed a rash that started on my face and neck and is now on the back of my hands but nowhere else. My face seems to have died down a bit now. Still a bit red but looks more like sun exposure than anything. Neck is itchy and red and my hands seem to be betting worse.

I called my reumatology team who weren’t concerned and went to the drs who weren’t concerned but it’s not great to look at and I’m a bit worried.

Has anyone else had this experience and what did you do?

Thanks

John

[notoverme2]

To Wengle82,

I had a relapse in October 2017 and my doctor wanted to use rituximab and prednisone. After 4 infusions of rituximab it didn't seem to be working so I was put on cytoxan (cyclophosphamide) and this is working. While I was on rituximab I had a rash that started on my calves and arms along with my stomach. I even went to a dermatologist to see if this was my Wegener's or a side effect of the drug. It was a side effect. During my cytoxan treatment this rash went away. I am now off of those treatments ( 6 total, 1 every 2 weeks taking 2 tylenol tablets and an injection of benadryl in the infusion of saline right before the cyclophosphamide infusion (500ml) which took 30 minutes). I am now weaned off of the prednisone (started at 50mg). I am taking Imuran as a maintenance drug for a planned 18 months. If the rituximab is working with you then side effects of a rash is minor. Good luck and let others know how your treatment is working for a remission in this crap of a disease.

[Dineshbothra123]

Do a CT scan I also had rashes in hands n legs it's very dangerous m having dad vasculitis m on drugs after having plasma exchange

[Alliand]

Hi John,

I have the same exact looking rash on the sides of my feet and ankle area, and more and more markings around my chest, lower arms and wrist. areas. I am also very fair like I think you are. Everyday, something new on my skin. (slight exaggeration), but almost true.

I am going to ask my dermatologist.if she will do a biopsy when I see her next month. I had this before the C-ANCA positive was found; more questions than answers. I am on 12mg. Prednisone/day and 15mg. Methotrexate once a week. I have been encouraged to have Rituxamab infusions and most likely will.

I had a lot of sun exposure in my life, but not in the last 18 months.

Could be a hypersensitivity or photosensitivity reaction to the drugs? Or allergic reaction? Or a skin manifestation of GPA which I know does exist.

You are not alone with your rash. I am in the USA. If I get a biopsy result, will let you know.

If you get any answers, hope you will post. I have chosen not to worry too much about the skin. If I had to bet, I would guess allergic or hypersensitivity reaction to one of the drugs. But the benefit of the drugs, probably outweighs the skin reaction.

Do you feel well in general after the Rituxamab infusions?

Best regards

[Wengle82 in reply to Alliand]

Hi Alliand

The rash seems to have gone now but I still have super itchy feet regularly but with no rash. It’s really annoying!. My wife and I came to the conclusion that the rash was due to me being in the sun as it only affected my face and neck and hands, but it obviously wasn’t the usual sun kissed look. It was definitely a reaction to something. God help me when I go to Menorca this summer! It’s died off now but I will keep an eye on it and keep you informed.

As for the rituximab, I have been fine since having it so can only recommend it to you. Had a bit of a reaction, itching mainly.. seems to be a theme here, while having my first infusion but since having them I have only continued to get better (fingers crossed!)

I am really hopeful that my ongoing treatment and recovery will continue in this way!

I hope all goes well for you

John

[Alliand in reply to Wengle82]

Very glad your rash is gone; great news. Years ago, I was diagnosed with a photosensitive allergic reaction to the non-steroidal anti inflammatories; I was taking Naproxyn in prescribed doses to control back pain from scoliosis. It worked great.

But every July, I would get large blisters on my hands and feet which seemed to go away by October. All this at a time when going to beach every weekend and some Caribbean get a ways in winter. I stopped the Naproxyn and blisters never came back even with continued sun exposure.

My dermatologist was stumped, figured out in a 2nd opinion consult. Some meds don't mix well with the sun; do be careful.

Haven't started Rituxamab yet; my blood counts are all over the place and Dr. wants me to see a hematologist first.

I think it is the prednisone myself causing the high whites and now some evidence of anemia.

Best wishes and keep in touch,

Andrea