Next rheumatology appointment 01/04/23. An internet review of "markedly elevated ESR '' is not helpful and/or is terrifying. At this point, I have no idea what to even think about this. I have done every painful test, undergone horrible biopsies, had infusions and infiltrations, lost my hair, lost my career, developed Cushing's Syndrome from steroids, consumed pill after pill and suffered their side effects, appeared at every appointment, and spent hundreds of dollars traveling to specialty/university/etc. hospitals. The only result is to have doctor after doctor nod at me as I sit humiliated in a hospital gown and listen to them tell me, "I don't know but I will monitor you".
I have been a professional athlete for over 35 years. Well, I was one. That is the career that is gone. I had an extremely healthy lifestyle: no smoking, no alcohol (maybe a champagne toast at celebrations), a 7-day a week physical fitness regimen, vegetarian diet, etc.
Perhaps one of this group, people that have experienced modern medicine, can give me some advice/direction. I am willing to have plasmapheresis and/or more Rituxan. Chemotherapy drugs, even low dose, make me extremely ill. Perhaps there is a suggested alternative to "modern" medicine?
Thank you.
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irishponies
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sorry to hear about your poor medical attention, I’ve got ANCA Vasculitis, I’ve received the same poor attention at the hands of many medical doctors (not my Rhumatologist) all doctors Barr my Rhumatologist haven’t got a clue. I’m currently on 6 month infusions of Rituximab, it’s the only drug I’ve had no side affects from,prior to that I had Cyclophosphamide which destroyed me pretty much. Have you tried or been offered cyclophosphamide? My current medical approach is not to have any interaction with any doctors. Your situation is worse than mine, finding the right Rhumatologist could be key for you my friend. I wish you all the best x
Hi Johnnyboy66, Thanks for your insights. Your destruction by cyclophosphamide is similar to what happened to me with methotrexate. I had horrific reactions to methotrexate for the 9 months I took it: near constant nausea and vomiting (yes, I took 1600 mcg folic acid every day!) and **WARNING** diarhhea at least 6 times a day. Most of my hair fell out. And methotrexate/steroids/rituxan combination did not effect the diseases' according to the labs (and me). I've been off it for just 2 months but feel 100% better and will NOT take methotrexate again. My hair continues to fall out and it took 5 weeks to reduce the diarhhea to just 2 or 4 times a day. I am no longer nauseous constantly. Is cyclophosphamide is the same class as methotrexate? From what I have read, it sounds like another horrific medication. I continue on the Rituxan infusions, I don't attribute anything, side effects wise, just the first few days a bit fatigued. But is it working?...I'm hoping the rheumy doesn't stop the Rituxan but I cannot force him to do anything. I have seen multiple doctors at specialty/university/etc. hospitals. The only result is to have doctor after doctor nod at me as I listen to them tell me, "I don't know but I will monitor you". The sudden ESR at 93 is very, very concerning. Something is wrong and they do not seem to know what it is. Reports say that the "cause will make itself evident". The not knowing is what is killing me, not the diseases but the stresses of appointments and inconclusive (painful) tests. I am beyond discouraged. Thanks, Johnnyboy.
I totally get where your coming from my friend, the doctors main aim is to blast you with medication to get your disease under control, quite a common term and phrase; blast you with medication!! They don’t have to go through the damage it causes physically and mentally, I’m really sorry to hear the extent of your suffering, cyclophosphamide is a chemotherapy drug, so bloody potent,I’ll never have it again. The issue for you like you said is not knowing, nightmare and the constant stress and anxiety of trying to get some straight answers from doctors is so draining!! It almost breaks you. Keep fighting the good fight and I hope your getting some support from a family member(s) who actually know something about your illnesses, 4 years on and my family still haven’t got a clue. Johnny Boy is here if you need a chat. 👍🏼
Given that rituximab is usually effective I wonder:
a) have they got the dosage right? I’m a pretty petite woman and it always seemed odd that I get the same dose as people bigger than me. Might not be relevant but potentially worth consideration as I know they can adjust frequency/dosage
b) is there definitely nothing else going on? I was almost certain (and still think I have it) before my diagnosis that I had relapsing polychondritis which rituximab doesn’t work for. You can have this plus vasculitis. Again not saying that’s what is happening but curious that the rituximab isn’t effective. Sadly there’s a lot of potentials
You could maybe just be given one round of cyclophosphamide to try control your symptoms and get you into remission, and then keep up with the rituximab? That’s what I had.
Hope you find a solution. This is such a horrible illness and agree they just pump your full of everything until something works and you get loads of side effects. I’ve got the weight distribution of the grinch since starting prednisone.
Irish ponies sorry to hear what has happened. I used to be an athlete, and competed internationally in one sport. All my life I was really healthy then around the time I retired things went wrong. Never expected this. I guess I also expected doctors to have answers and diagnostics to be good.
Over Christmas had bad reaction to mri contrast and tissue over legs and chest and abdomen hurt so much my knees tightened up and right hand at times did not work.
Found I react differently to substances that others find okay.
My new year's resolution now is to concentrate on having good GP and a good rheumatologist. I feedback so much information to all my doctors summarising all I know and being frank with them. Also I postpone appointments if I feel rubbish.
I had covid early in the pandemic. My immune system used to be brilliant. In my case covid may have contributed although some symptoms had started in the year's just before.
Do you belong to a support group. Here in the UK there are some?
The determination you had with sport helps. I find swimming helps a bit. No longer can do much outdoor activity because of the sun but finding new hobbies and friends. Take care and hope you find more informed doctors.
Hi Striated, Thank you for the support. I tried to answer your queries below.
I find that the medical field's approach to MRI dyes to be extremely cavalier. According to the release you sign prior to an MRI with dye, "Too bad if you have a reaction." I have stopped permitting them to use the dye and thus the MRIs have magically ceased being ordered. I'm so sorry you had your reaction. As a result of a medication reaction, I was in the hospital 12/2019 and got the then VERY new COVID. That was a very large city hospital that has since published that they had COVID patients at that time but no one knew what COVID was. There was no vaccine then. I was vaccinated in spring 2021. I got COVID for a 2nd time, less than a week post-infusion at a "cancer treatment center" that packs us in an open floor space like sardines. For hours at a time, we are less than 3 feet apart, all 55+ patients in clusters of 4, in chairs back to back and feet to feet. The nurses turn sideways to pass between us. It was no wonder I got COVID. Hospitalized with COVID and pneumonia and given Paxlovid. When tested COVID negative, discharged only to be positive, 3rd time, and very sick within 5 days. Ah, the medical field, sworn to "first do no harm."
I have a fabulous GP. She seems very interested in my case. She does read all of the reports from the various specialists/hospitals and asks questions. Her abilities to treat are quite limited as she is not a specialist. The rheumatologist does not give the impression of interest. I have seen all 8 rheumatologists and university hospitals in a 165 mile radius and. As I am not working, I cannot afford to travel or pay co-pays anymore.
What type of support group are you speaking of?
I continued an athlete's healthy lifestyle, walking 4.5 miles every AM and swimming 40 laps every evening in addition to eating organic, etc. I'll never be a pro again or even close to that level of fitness but I am addicted to the endorphins. Every doctor that has ever examined me has entered the room, looks at me wide eyed and says, "You don't look sick." Then they read the reports on the computer, peer over their shoulder and say, "I don't know how you are sitting there and not in a wheelchair." It is not a scientific study by any means but the athlete's healthy lifestyle has seemed to keep the diseases at bay visually. The diseases have taken a horrific toll on me physically but have devastated me mentally. This new suddenly "markedly elevated ESR" at 93 is a BIG wrinkle. Something else is wrong and I am beyond anxious about it.
The doctors I see, think I look well..I can still swim a mile.. if I have time. The more I push myself the more the inflamation goes and better my life is.
I had covid March 2020 and I believe it changed lots of things for me.
They are still putting the pieces together. My 'long covid' merged into autoimmune disease and buckets of inflammation.
Is there a vasculitis group in the States that meets virtually, either in the state or national.
I found getting involved a research project also helped. Patients meet virtually and discussed their diagnostic journeys.
It is not a drug trial but more like a focus group.
My GP is great, and in the end I found rheumatologist that after diagnosis where examined, now meet using Zoom.
Local NHS is getting better a bit, so I'm hoping the good youngsters replace the ones that governed it all last year..saying it was all in my head...
Yes, an unbelievable journey..the determination learnt in sport helps..
It is a bit like a spiritual battle too.
All the best for the New Year..three hours to go here.
If it helps, it took to my 2nd round of rituximab before i started getting real results. I hope you are able to find a regimen that works for you, best wishes and Happy New Year 🤗
so sorry you are going through this, irishponies . I live in the USA. Initially, prednisone worked for me, but dr didn’t want me to stay on it long term. Getting approved for Rituxan by the insurance company was difficult but when I eventually got it worked well. I know my experience has been a lot better than yours and I don’t have much to offer with regards to advice - I think finding a rheumatologist who is knowledgeable and specializes in your diagnosed condition is important. If they are far away from where you live at least they can consult with your local rheumatologist. Drs who have published on your condition might have alternative treatments to try. However, in your post it says you have seen a multitude of specialists so maybe you have exhausted that avenue. Another thing I did was to go on a gluten free diet. Not sure if this helps or not, but it can’t hurt. There’s loads of books out there about anti-inflammatory foods etc. I hope you find relief soon. I know this is very scary. Wishing you all the best.
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