When I thought PsA was more than enough to cope with I got Shingles and Vasculitis. I could not have the Shingles vaccination due to it being a live culture at the time was on Costynex. The Vasculitis came first and it reminded me of when I had chicken pox but not itchy and without blisters, sores everywhere. Then came the shingles with a cluster of blisters under my right arm. Burning, itching and jabbing pain like electric shocks on my right shoulder blade area and right through to my chest. i could not wait for an appointment with a GP so went to the emergency at the hospital then a few days later to the GP and by then the blisters turned to thick scabs. It is now 7 weeks on and the electric shock pain seems to be gone and the itching is not as bad. Still some burning and numbness sensation. Rheumy left a message to go off the Xeljanz tablets which never worked for me. Visting Rheumy not available to visit local doctors clinic until 31st July due to COVID 19. My worst flare up with Psoriasis that I have ever had. All over my scalp, face, and around eyes. On my back, chest, arms and legs. Ankle, heal and foot pain worst than ever which makes it very painful to walk. Tail bone and right hip painful Fingers and knuckles on my hands painful with some red and swollen. I can’t tell what is PsA and what is OA. I was feeling sorry for myself and I look terrible. My 3 year old grandson came to visit yesterday which is what I needed and his visit stopped me from feeling so down. An appointment with my local doctor in a weeks time. I have got to improve as I feel it can’t get worse. Well that is what I am hoping it for. I am grateful for the improvement with the Shingles but it has taken its toll on fighting spirit. How do others cope when enough is enough on top of PsA.
Wow I’m not sure how I would cope with that. Maybe more rheumy sessions, email, phone? But I do know grandkids make the world better, so maybe more sessions with your little guy! Hope things get better for you
Bella, what a time of it! I’ve had an “interesting” couple of months too - but a big difference has been that I’ve been able to do Telehealth easily with my GP and Rheumy - I know it’s not always as good as in person, but better than having to wait like that.
Have you asked them about Telehealth or did they offer any? Are you happy with your Rheumy and GP clinic? I think this Covid lockdown-open up yo-yo might go for a while so it might be worth talking to them what the plan is next time - not sure if you are in a regional area or could look at other clinics if they are not helpful?
Hi. I am interested in your vasculitis diagnosis. I am also on Cosentyx and have been trying to discuss this with my rheumatologist. I have done on line research looking at medical journals and they are finding a correlation between Cosentyx and vasculitis. So far my rheum does not agree with me but I believe I am correct. I have had PsA for over 30 years and like you have had to cope with comorbidities and new regular surprises. It does take a toll and I try to remind myself of what I am able to do each day. I try not to give up hope the next day will be better. We are human and dealing with so much not understood by others in our lives. We must gain strength and hope from each other.
There indeed is a connection BUT NOT what you think it is. 8% of patients affected with psoriasis without vasculitic manifestations are positive for perinuclear antineutrophilic cytoplasmic antibody (P-ANCA), Actual cutaneous involvement however is rare. Although not terribly common Vaculitis is a known comorbidity with PsA. Cosentyx is at present is essentially the only med approved to treat it. I would suggest its an unfortunate coincidence.
In response to Jen & Cinderella. I live about an hours drive from the country town of Mullumbimby in Northern NSW Australia. I live in a rain forest on the same property as my son, his wife and my 3 year old grandson. To get to the town of Mullumbimby we have to travel over 14 creek crossings and the creeks ocassionally floods and is not passable in a 4wd… I had one telehealth appointment with a GP when I could not bear the pain with the Shingles, after the 6 days of Prendisone ran out. I probably should live closer to town but it is more important to me to be close to family and someone to call on if I need to. My daughter in law cooks an evening meal for me as by that time of the day I am mostly too tied to do so for myself.
I tried to get a Telehealth appointment with my Rhuemy and the receptionist said all their patients were immune suppressed and they had to choose the more serious cases. There are only two Rhuematologists who visit this area and both are from the same practice and travel down from interstate. I had the option of travelling up to this practice but was in no fit state to travel anywhere. I sent a email to the receptionist to pass on to the Rhuemy. I do not have mobile phone reception and it is not a viable option to get a land line as my Granny cabin is about 800 metres from the main road and I would have to pay for this.
I was diagnosed with vasculitis at the Emergency section at the closest Hospital. This was on the Queens birthday weekend which was a public holiday The Rheumy phoned my son’s home and spoke to his wife whilst I was at the Emergency Dept at the hospital and instructed her to tell me to not take the XeLjanz if I had Shingles. I was given a course of Penicillin in case I got a secondary infection and 6 days worth of Prendisone. The hospital doctor was not sure about the Shingles yet I was and so was the nurse who attended to me. The Shingles was confirmed by a GP 3 days later when I was squeezed in for a quick appointment… I was sure it was Shingles after doing my research on the internet, especially when I had blisters under my right arm and sharp jabbing pain like an electric shocks on my right shoulder blade and through my chest on the right side, along with burning and itching. I got nothing for the pain even after I repeated myself and said that I was in a lot of pain. This Doctor said to me it could be a lot worse.
The vasculitis is mostly not itchy just sores. Only when the scabs are about ready to come off out is there a bit of an itch. From my experience doctors rarely give a duel diagnoses, it seems it has to be one or the other instead of the possibility of more than one thing happening to us PsA patients. I have not been on Costynex since last Sept 2019 when I was diagnosed with Ulcerative Colitis. The Colitis (which I forgot to include in my original post) took at least 6 months to get under control. with diet and a mixture of prescribed and alternative medicines. The colitis flared up which I suspect was from the anti biotics. I should have known better, and not taken the anti biotics for a possibility of maybe a secondary infection.
The Shingles have settled and almost gone and I have a follow up appointment in a few days time with the GP who did a telehealth appointment and who did prescribe pain medicine Lyzalon (pregabalin 75 mg) and Zostrix (capsaicin 0.075%) a topical analgesic cream for the Shingles. This can be brought over the counter in Oz and I am going to try it on my very painful left ankle and heal. I have read about the ingredient Capsaicin which I believed is derived from Chillies. I had to use disposable gloves to put it on my skin as washing my hands with soap and warm water was not enough to completely remove it. A couple of times I touched my mouth and did it burn. I can’t remember how or why it works but it did work on the burning pain of Shingles.
I will try and discuss tntlamb’s information with my Rheumy. tnt lamb thank you as you always do your research and opens up new possibilities…
Many thanks to all who responded to my post and for just being there when I so needed some support. If this site was not here then I think that I would have sunk into depression. I am not a person who suffers from true clinical depression just a few down days now and then and I know I have to stop feeling sorry for myself and get on with life and focus on all the good things. I am very grateful and appreciate the love from my family even when they don’t understand my on going battle with PsA.
Sorry Bella, you have talked about the beautiful property you live on near (kind of near) Mullumbimby before - I am a bit forgetful. Whilst a bit remote, I can certainly understand why it is such a marvellous place for you. I’m in suburbia and would love to live in a place like that one day.
It certainly sounds like you are doing everything you can in a challenging situation, though I feel I’d like to reach my hands through the internet and shake the Rheumy practice to have got a better response to your initial request for a Telehealth - at least they helped when you got yo hospital. I sure hope things start to settle down soon for you.