Vasculitis UK
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1st post any advice welcome

Hi All,I was diagnosed with Systemic vasculitis around 1 year ago,have looked on here quite a bit and I feel more should have been done.

I am extremely weak,my kidneys hurt ( but nothing shows on scan ) I have not had a biopsy, I was on a high dose of pred now down to 1mg and soon will be taking none.

I wake every night with a dead arm and when I move my arm and hand hurt.

I also get pins and needles in my hands.

My rheumatologist came up with the systemic vasculitis and when I have asked what type of vasculitis I have I really don't think he knows,I have pushed to see a nephrologist and have an appointment on June 20th.

Any advice would be very welcome.

Thank you in advance.

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I wake every night with a dead arm and when I move my arm and hand hurt.

I also get pins and needles in my hands.

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How long have you been getting these? Many years or just lately if it's okay to ask this? I get it myself.

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Hi tommi, I have pins and needles in my hands and feet and usually wake at night with a numb hand. It is frustrating when not many people seem to understand this disease.

This has been going on for a couple of years for me.

I would love to hear if anyone has been able to do something that relieves this.

Regards

Jo

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hi Tommy

You do not say how you were diagnosed.

Systemic Vasculitis is diagnosed on symptoms, blood tests and biopsy, and needs relevant treatment to achieve remission, and also a maintenance dose of steroids and immunosuppressants. You need to see someone who is experienced in Vasculitis. Hopefully, your nephrologist appointment should bring you some further help.

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Thank you for that,I had a lot of symptoms without knowing it was vasculitis only when a rash came out it was confirmed however after a week of hell I went to A & E and was admitted for a week.

I had plenty of blood tests but no biopsy,the only treatment I have had is prednisolone and meds for bones and type 2 diabetes, which came out while I was in hospital but no immunosuppressants I thought that's what the pred was for.

I also have pain relief as I had small bowel pain and was also put on asprin.

Sorry I just feel lost in all this.

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Hi again

I was diagnosed in 2016 with systemic Vasculitis, and my initial treatment was 60 mg prednisolone,and cyclophosamide for 3 months. I was then put on Azathioprine and now down to 5 mg prednisolone. I had lung, kidney,sinus and skin and brain involvement, and was in hospital for 12 days, including a week in the high dependency renal unit. I can't really comment on the dose of medication you have been prescribed, whether this is dependent on the severity of the disease, but my earlier comments apply that you should be seen by someone who is experienced.

It can be a confused and frightening time, but let me try and encourage you , by saying that as ill as I was, I am now doing very well, and able to everything I was able to do before I was ill, so please take heart, that with the right treatment and care, there can be light at the end of the tunnel. God bless

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You are indeed an encouragement when you say' I am now doing very well and able to do everything I was able to do before I was ill'. I am not usually on this site, but on the PMR/GCA site, but like to read other forums too.May your remarks be that light at the end of the tunnel. Trust you continue to be well.

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I am very happy for you. To what do you attribute your recovery, remission . ???? You do give us hope.

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Hi Christopher 47

I think my remission/ recovery is due to a few factors. I'd had a miserable 9 months before diagnosis, but when things deteriorated rapidly, this is when diagnosis was made and aggressive treatment was started. This involved, as I mentioned earlier, high doses of steroid, also cyclophosamide, and also plasma exchange, which took place over 7 days whilst in hospital. This cleared the ANCA antibodies in the blood, and I believe helped greatly.

My recovery didn't happen overnight. It took about 6 months before I began to feel like I was getting back to normal. The first three months were the worst, that is the time I was on the cyclophosphamide. My kidney function improved and I became ANCA negative. So I feel fortunate that the treatment I had , although aggressive, was successful. I was also blessed that my Christian faith helped me through. So that is why, almost two years on, I am able to say what i said about there can be light at the end of the tunnel. I hope you are able to find your way through to that place too

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Sorry, the predictive text seems to have called you Christopher, instead of Christophene!

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Hello nanaC,

Unfortunately, it seems there has to be a crisis and hospitalization before the needed aggressive treatment is given. I sought care in 9/16 after 10 days of agonizing muscle pain in my arms and shoulders and what turned out to be a granuloma annulare on my hand. This pain was preceded by 2 viral-like episodes, one in May and one in August. In between I was fine. I have had a severe scoliosis all of my life, but pain didn't start until I was in my 30's, with its nasty course of nerve compression, and disk problems , and vertebral nerve inflammation, but I did well on NSAIDS and was able to exercise 4x week at the gym, work full time, run the household and travel a great deal.

All was going well until I started having gastritis and skin blistering from the NSAIDS. A fine Prof. of Dermatology figured it out.

My primary care doctor switched me to tramadol which had just come on market as Ultram. Again, I was fine for many years. In 1/16, I was bitten by a mosquito carrying the chikungunya virus, while in the Caribbean; this may have been my trigger.

As soon as it became impossible to ignore, I saw a rheumatologist who took lots of blood tests and put me on a trial dose of prednisone. 16mg/day. It worked like magic. I learned at the 2nd visit that I had C-ANCA antibodies, but since all my pain was gone, treatment continued with prednisone only; still a lot of fatigue, but no pain.

7 mo. later, I was put on a tapering schedule and got to 8mg , original pain quickly returned and I lost vision in my left eye for about 7 minutes; I resumed my full dose of prednisone on my own. I learned ,by taking the initiative , and wrestling my way to an appt. with a neuro-ophthalmologist, that the central vein of the retina of my left eye was occluded.The rheumatologist put me on Methotrexate once a week 15 mg. , but continued to reduce my Prednisone too quickly and too much.

I just found another rheumatologist who asked to keep all my records to study until I return on June 27. He was not happy with my being placed on methotrexate (as was a hematologist I saw) and suggested that he would cut out the Methotrex and raise my Prednisone; despite the ANCA antibody presence, he was more inclined to think it was PMR/GCA per my symptoms. So not much progress made in last 18 mo. Feel I am at Ground 0 Again. Hope new doctor will see the light.

I do believe raising the steroids is going in the right direction. Now in the USA, our health agencies have frightened doctors with loss of license if they prescribe anything that can be considered a narcotic. I still have some tramadol left, but when that's gone, I don't know what I will do except to think of leaving the USA. I am married to A French citizen and would thereby qualify for legal residency as my husband has done to live here in the US.

A large group of chronic pain sufferers are pushing back and our drug enforcement agencies have agreed to re-visit the question. I do hope they are sincere and not just going through the motions. I do intend to write and all submissions are due by September 10 after which there will be a public hearing.

Thank you again for your great story. Are you back to your old self?

It is sad that so few health care providers know about vasculitis, how much physical and emotional harm it can inflict. Where is medical school education? Doctors are trained to look for horses, not zebras; anything they don't see every day, doesn't seem to exist.

I think the UK is way ahead of doctors in the US. Keep us in the loop with your regained health. Continued best wishes...

I

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PS I should have said to ring the Vasculitis helpline for further advice and help

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From looking on here systemic vasculitis is a term used when there are more than 1 organ involved ?

When I was in hospital I had what was described as glass shards in the tips of my lungs,I had blood and protein in my urine.

I have had all this checked as an outpatient but not much explained I still have a massive issue with sweating,I do remember seeing a blood test showing ANCA negative.

I have not had a lot of regular checks as in monthly which I know i should have had at the very least monthly blood and urine checks.

I am trying to answer as many of you kind people who have replied and hope i have covered everything.

I did phone the helpline a year ago and got a name for a specialist who I am still trying to see,I recently phoned the helpline about my blood results and they were unable to help me.

To Andrew's question,I used to visit Huntingdon a lot as I had a friend down there but i live a long way from Cambridge I live in the north east.

Thank you Nana C and Maria58,Scvren and every one that has replied.

God bless.

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I have had the same experience; after 18 months, I am getting worse; no arterograms or other vascular studies, no biopsy. Now , I have learned that after you have been on prednisone for 2 weeks or more, no biopsy will likely be accurate.

I have found out on my own that I have an occlusion of the central vein of my left retina which caused a temporary vision loss. I aggressively fought for an appt. with a neuro-ophthalmologist who ordered duplex doppler of the orbits( no help from rheumatologist) so the disease has done some damage; vision ok with my glasses now, but disconcerting to know that it could cause more. This can lead to glaucoma.

I finally changed rheumatologists who disapproved prescription of methotrexate; a hematologist said same thing; Methotrex can cause leukemia and lymphoma, and we are already at higher risk for these blood cancers because of vasculitis.

Very few doctors are experienced, and even the experienced ones, don't get it right. I understand that prednisone softens the bones, but why such fast tapering.?? If a drug is giving you relief, you should have access to it until you feel ready to taper.

More should have been done for you; I would search for a new doctor.

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What do you mean More prone to blood cancers with Vasculitis?

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If you read a medical text on Vasculitis, it states that people with systemic vasculitis have a statistically higher chance of getting lymphoma or leukemia , both cancers of the blood. I hope I didn't frighten you.

Systemic vasculitis means your own white cells are mistakenly attacking the blood vessels that service vital organs, in particular, the lungs and the kidneys. But I am not a doctor, but have read a great deal on the subject. It is a matter of statistics. It doesn't mean it will happen to you.

It's important to read and educate yourself and ask your doctors lots of questions.

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How do you find out what type of vasculitis you have?

That’s where I’m having the problems is finding out what type I have and what doctor figures that out.. I’m currently not seeing a rheumatologist waiting until after I have my scopes with the gastrointestinal Dr to see what he finds in my gut.

Was Prednisone the first med they put you on to zap it

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Yes, prednisone was the first medication I was placed on; dose is usually calculated by body weight. It worked like a miracle in less than 3-4 days. It doesn't cure the disease, but it helps a great deal with infammation and pain. It did zap my pain, and restored energy,but over time the effect doesn't feel quite as dramatic, but still good.

It does soften the bones ,causes considerable weight gain, can round the face, called "moon face."and gives some people a hump on their back .It also also raises blood sugar. I even went to the gym at first. But then doctors want you to taper and start lowering the dose which starts to feel unpleasant, usually at 8 mg. And that's because the natural adrenaline your adrenal glands make declines and your adrenals kind of go to sleep because the prednisone is doing their job.Your body naturally makes 8-10 mg a day so when you reach that 8 mg and below, it gets hard. And your original symptoms start coming back.

Do you have severe musculoskeletal pain that you never felt before? Any respiratory symptoms, any kidney/urine problems? Specialized blood tests can tell what type of vasculitis you have. There are 2 types: C-ANCA and P-ANCA. Having said that, sometimes the symptoms and blood tests don't always match up. ANCA means that your white blood cells , the neutrophils, are mistakenly attacking your own blood vessel system.

If your scope results show excessive inflammation or bleeding, that would be a clue. There are many types of vasculitis; involving central nervous system, skin, lungs, kidneys, hearing, vision and really anywhere since the vascular system is throughout the whole body.The classification depends on whether it is attacking the small and medium size vessels and/or the large vessels, like the aorta.

Until Prednisone began to be marketed in the 1950's, C-ANCA (formerly known as Wegener's Granulomatosis) was universally fatal within a few months of diagnosis. Today it is treatable, and lucky patients can go into remission for many years, but it is subject to relapse.

There are some ebooks and articles on the internet that explain it in fairly simple terms.

I understand their is a wait time to see a good rheumatologist, so you may want to make an appointment now; you can always cancel if you think it is not necessary. If vasculitis is in question, be sure the doctor has good experience with vasculitis.

Good luck with the scopes, and whatever follows.

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I should have said Bechets is in the family. I am not sure if that is P-ANCA vasculitis, but blood tests and imaging should run it down. I hope someone with Bechets responds to you.

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Tommi47, Never say sorry for feeling lost; this site is full of people feeling lost. Prednisone is an immunosuppressive drug.. It seems that many doctors add drugs like Azanthopine and Methotrexate to the mix, used in cancer treatment in much higher doses.I know it has to do with T cells and B cells, both white cells, lymphocytes, which aid at eliminating invading pathogens.

It all make sense when talking about infection. T cells are the "killer" cells and are stored in the thymus gland. B cells stored in bone marrow, and together they attack antigens,the unwelcome visitors. It is all beyond my grasp and biochemically very complex.For C- ANCA vasculitis the antigen is PR3; and for P ANCA, the antigen is different and I don't know it off the top of my head; there are a number of inexpensive ebooks that explain all.

For whatever good they may do, I have been told by a hematologist that they kill healthy cells while they are at it and increase the risk of leukemia and lymphoma in people who are already at higher risk for these blood cancers. My new rheumatologist also expressed concern so I have stopped the methotrexate until I see my rheumatologist again with all new blood work, and after he has had a chance to review all my relevant records.

And of course there are the Rituxamab infusions which seem to have helped many on this website, but never seriously discussed with me yet.

But you are not lost by yourself; we are all kind of dazed, especially upon receiving the diagnosis. It's a dazzling diagnosis, and I don't mean dazzling as in a type of beauty, but rather as a glazing over of your emotions.

Lost and Found Department of vasculitis UK. Keep us all posted.

.

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Dear Christophene, A lot of what you have posted on this thread is making more sense to me than a lot of things I have read on other posts so I thank you for that.

The doctors I have seen don't explain in enough detail but I have pushed to see a doctor recommended to me and have a few appointments coming in July.

There is something else needs to be thrown in the mix for myself as I also have Cerebellar Ataxia so that makes things a little harder.

I am pleased to see a little humour as in the lost and found department,we all need to keep positive.

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I have learned so much from this website; with our collective knowledge, I know we know more than the run of the mill doctor. Yes, laughter helps a lot.

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Sounds like you were not getting the best of care at first; better in hospital. Vasculitis is just a broad term that encompasses many different categories of illness. Prednisone is an immunosupprent; but sometimes additional immunosuppesents are added to treatment. The prednisone raises blood sugar so it is possible that your diabetes is drug induced, and will resolve when you no longer need prednisone. No way of knowing that for sure, but hopefully you do not have diabetes, but for the prednisone.

Hope you get straightened out with nephrologist. Let us know how you are doing...best wishes for a good outcome.

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Hi. You have good advice from the other posts. If you phone the helpline, they can guide you to the nearest consultant specialist so you can ask for a referral. I would also advise keeping a diary as it helps a lot when you go to clinics. I also agree prednisolone is not usually used on its own so I would ask why that was. Use a notebook and have your questions ready; write down their answers too so you can look back over them; if you can take someone with you, even better; ask what bloods they're doing and what are they looking for; have they requested the ANCA blood test; ask if the consultant you're seeing has vasculitis knowledge as some of us have 2 or more consultants for different effects but the one consultant takes overall management so you'll want to know that too. You haven't mentioned rashes but if you get any, take photos on your phone. Can't think of anything else but good luck.

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Like you I was diagnosed with systemic vasculites , started at high dose prednisone , they tried dapzone , now using 1cc methotrexate , and down to 5 mg of prednisone , it's a long road to remission but all we can do is keep trying , most important part is having a good rheumatologist, and constant monitoring to keep the desease in check . Good luck , Ren from Vancouver Canada

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I’m curious as to what your symptoms were??

I’ve been diagnosed with vasculitis with a cranial nerves flare and abdomen and doctors are trying to nail down Bechet’s.

How is it diagnosed as systematic vasculitis?

I have had a rash and red bumps, achey body, flu symptoms stomach issues, from cramps to bowel issues.

When I go for long walks my legs itch, is that a normal thing with vasculitis?

I’ve had no luck with a rheumatologist, as when I saw her I was not in a big flare and my bloodwork came back normal range. But since then I have had more symptoms arise and bloodwork done with a a sed rate at 28.

I’m wondering if I should be seeing a different type of doctor?

Now I’m just seeing the doctors that are specialists where my symptoms are. (Retina, Neurologist & Gastrointestinal) I’ve been in so much pain and not sleeping well.

I’ve got less than 2 weeks now until I see the gastrointestinal doctor for him to do my endoscopies once he sees in there I’ll hopefully get medication to treat it.

Any help, comments would be appreciated.

I’ve met so many kind and wonderful people on this forum that have shared stories and now I know what I’m going through hasn’t been made up in my head, it’s real and just been misdiagnosed for years.

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Dear frustrated ,I feel your frustration , my initial symptoms where itching burning feet is my legs , numbness in front thigh , carpal tunnel symptoms in right hand , then the cold that would not go away ,felt like I was beat up with a baseball bat , put on multiple antibiotics, seemed to calm down , the palms of hands began to itch, then painfull lumps came up on my palms and the ictching was sever to the point I was losing it, the swelling in hands and feet turned purple , joints prostrate stomach was in incredible I could barely walk , my wife took me to the hospital, they told me I was having an allergic reaction ,told me to take reactan an allergy medicine , ate those like chicklets ,but to no avail , went back to hospital and was lucky enough to be a doctor that was thurough, and cared he came and talked to me and told me I needed to see rheumatologist asap , he then sent me to a teaching hospital here in Vancouver ,Saint Pauls ,and the rest is history , Dr involved , Reumitologist, neurologist, dermatologist, and the CRDC, The CRDC was to insure that vasculites was the primary disease, as it is so far . At present still working not sure for how long but feeling a great deal better hoping that the methotrexate will work , and off the prednasone, the side effects are terrible , I wish you luck and better health in the future ,contact me any time as we all need to support each other through this terrible disease, that up until a year ago I had never heard of Regards Ren Larsen from Canada

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I am glad you are feeling better Scvren. I don't understand why it is better to be on Methotrexate, a drug that kills healthy cells and used in cancer treatment in higher doses. Why such a rush to take Prednisone away; it is the only drug that gave me relief.I understand that it causes bone softness, but I have a DEXA scan that predicts 0% chance of fracture in next 10 years.

Coming off Prednisone is the worst. Vasculitis is a rare disease that is virtually unknown to many physicians and the public. Until steroids became available in the 1950's, vascultis was universally fatal. Steroids is what is saving our lives.; I don't get it why the rush to replace them with cytotoxic drugs.

If you can, going on bioidentical hormones can make your bones and muscles stronger; depending on age, gender and current blood levels.

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Thank you for all of your information I appreciate it!

I will look into the book you suggested. I have faith my doctors will figure it out and I’m working with a functional medicine doctor also to help heal my body at the cellular level.. I have been working on getting things out that could be inflammatory to me.. (Sugar, Dairy, Gluten) Taking Fish oil (Nordic Naturals)

CRDC stands for what ? type of doctor?

I’m in US and are not sure what to search for.

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Sorry I got the reply’s messed up Christopher suggested the book.

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"You are your own best doctor. When something doesn't feel right, chances are they aren't. Remember it's not in your head. Make a mental note of that." Sherri Lyn Schwar, author of "Sick and Tired of Being Sick and Tired,." Sheri 's health started to degenerate at the age of 26 after giving birth to her baby. She eventually learned that she had a type of vasculitis called Takayasu's Vasciltis.

The book is available for purchase at Amazon or other book sellers. Frustrated2, reading this book will help you know you are not alone. I recommend it to anyone suffering from any autoimmune disease.

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Thank you for the book suggestion. I will look into it.

I am also working with a functional medicine doctor (Mark Hyman, Dr. William Cole, Dr. Jockers) these are a Few you can look at. (IFM.org.)(To find one in your area) or google institute of functional medicine My Dr is Taking away the things that could cause inflammation- Sugar, Dairy & Gluten also taking fish oil (Nordic Naturals) we are working at healing me at the cellular level.

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Dear Tommi,

Sorry to hear that you are Suffering so. Just a suggestion but how close are you to Cambridge? I only ask because Dr David Jane, the country's leading authority on ALL 'things' auto-immune, is based at Addenbrooke's Hospital. (Dr Jane is also an Adviser to Vasculitis UK, our sister organisation.) If you can get an appointment, with Dr Jane's Team, I'm sure, at least, some Progress can be made. I have 'Opted' to remain under there care, with an annual review, despite now having an extremely good Consultant.

Once again Tommi, sorry that you are suffering so, I know that we ALL send you, our collective, Prayers.

Kindest Regards

AndrewT

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Thank you, I have the itching burning in my legs, my head,

Stiffness in my neck and lately back to wear I can’t lay on a pillow. My face itches and has some red bumps and bumps randomly on my face, chin & forehead, ear and behind ear.

So your rheumatologist did the diagnosis?

Funny thing is mine threw her hands up and said nothing was wrong and if I had a flare to try these meds but tossed me back to my Neurologist and primary Dr, Thank-goodness they didn’t give up and the neurologist found vasculitis..

But since it’s showing something in my abdomen we can’t treat it until I get the endoscopies done.

What is the primary med you take for your vasculitis?

Do you also have Bechet’s?

Thank you for being so kind and replying, I appreciate it!!

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