Long Covid Vasculitis

[M3LZY]

Hi, I'm a newbie here. Is there anyone else out there who has vasculitis from contracting covid please. I caught covid in March and I have just been newly diagnosed with vasculitis. I'm feeling really alone with it all. Thanks in advance ❤

[Main1234]

Welcome to the group that you didn’t want to join. Vasculitis is a rare disease , do you have a good consultant who has knowledge of vasculitis? Usually a rheumatologist.

The vasculitis uk has an excellent web site and helpline if needed .

There is also a supportive face book page as well.

I know it’s feels overwhelming at the moment but with knowledge, time and treatment you will begin to feel better.

On a side note some of the long term symptoms of long Covid are like some autoimmune diseases.

[zoe69 Moderator Volunteer Vasculitis UK]

Main1234 has given you some good advice.

There are many triggers for vasculits, mine was possibly a streptococcal infection. Do they think that covid triggered yours?

Early diagnosis and correct treatment are essential. Do you know what type of vasculitis you have?

Keep a diary of your symptoms, it can be very helpful. Report any new symptoms to your doctor.

[M3LZY in reply to zoe69]

Hi Zoe, covid was definetly my trigger. I record every day with regards my symptoms. It's just horrible. I've woken feeling really depressed again.

[valwood in reply to zoe69]

I wanted to put a laughing emoji against this post, you can only report new symptoms if you have contact with a medical professional.

[sorefeetsoldier]

Hi,

Welcome to the site, there is lots of support here and Excellent advice, Interested in what is your symptoms?

Take care

Sfs

[M3LZY in reply to sorefeetsoldier]

Pins and needles that move around. Mainly in my hands and feet. Nausea, fatigue, weight loss. Change in colours of feet and hands. Abdominal pain which can travel entire torso. Back shoulder pain, chest pain. Jaw pain, neck feels like it's squeezed. Blurry vision. Tbh the list seems never ending. Tummy problems, temperature comes and goes. Sore gums and teeth, ulcers at times. Livedo reticularis moves about. Heartrate spikes... aching joints knees hips shoulders. Sorry I jumped in with symptoms straight away. As you can see I'm desperate with the way I'm feeling at the moment. Thankyou for responding to my message.

[sorefeetsoldier in reply to M3LZY]

Hi,

I do understand how your feeling due to your multiple symptoms, the good news is that you have been identified as having Vasculitis and treatment started (hopefully)

What Medication have you been prescribed?

Keep an eye on your blood sugar's too, as I became Type 2 Diabetic when I Had my onslaught of Wegners ,aka Vasculitis.

Look after yourself

Sfs

[M3LZY in reply to sorefeetsoldier]

Hi, I haven't veen prescribed anything just ibuprofen as it's through covid. Just ibuprofen 😟

[M3LZY in reply to sorefeetsoldier]

Thanks on my last blood test my blood sugars had increased which is interesting. Possibly covid was the trigger. My cholesterol also increased.

[sorefeetsoldier in reply to M3LZY]

Hiya,

Everyone is different and with you having had Covid is probably a whole new learning curve for the Docs!!!

I'm sure they will be keeping an eye on the important signs, but if you feel terrible keep at them. And remember this site has people with great knowledge when you need it.

Take care

Sfs

[eh66 in reply to M3LZY]

Your symptoms are pretty similar to my own at their worst, resulting in me being hospitalised and wheel chair for several days over Xmas (2020) period whilst they figured out what was causing my symptoms. But there is hope (whilst everyone if different) since then I have gone from basically not being able to walk at the start of the year to cycling 700+km plus 5K run from March 2021 on-wards. Pretty much every day I take the dog for a 2-3 mile walk. I am glad to be off steroids as they stimulated my appetite hugely. I try to eat plenty of fresh fruit, roughage and veg - usually as a weird smoothie. Sure I have had badish days but I have more goods days and hope it continues that way.

[M3LZY in reply to eh66]

So good you've made progress x. Did you get it via covid. My heartrate seems to keep spiking then dropping low. Swollen purple chin today feeling warm and neck squeezing sensation. So I think vasculitis is here today. Pins and needles in my feet. Do you take any meds at all please. I just seem to feel worse at the mo x.

[eh66 in reply to M3LZY]

Yes I think it is partially luck and partially I was pretty fit to start with, plus a good consultant. I have had 2 kidney biopsies, 3 Rituximab transfusions plus 1 for CYC, and a lot of steroids (75mg daily) initially now down to zero. Currently on a Statin (slightly high cholesterol), Ramipril for blood pressure/kidney protection (I am hopeful I might be off that soon as the nurse said I have the blood pressure of 21 year old) and Co-Trimoxazole (an Antibiotic). My resting heart rate shot up from 56 before to over 80 at Xmas, now down to 57 again. It was quite prone to spiking for a long time. I still have sinusitis and my joints are prone to inflammation but I can live with those.

I try to exercise every day (actually twice most days), but it is a case of doing what your body will let you. I don't know what actually triggered it.

[M3LZY in reply to eh66]

Can I ask do you get days you're totally wiped. My hips are really hurting today. Currently still in bed 😟

[eh66 in reply to M3LZY]

In the early days there were definitely crap days but the steroids helped a lot then the transfusions. If you haven't already I would speak to your GP and especially a consultant with experience of treating Vasculitis. Everyone is different but personal experience is that it does not treat itself or disappear over time.

[Rarity1 in reply to M3LZY]

I feel your troubles and you are not alone albeit it really does feel like that most of the time. I was diagnosed with EGPA VASCULITIS three months ago and it’s a lottery every day as you don’t know what’s going to happen with your body. I’m still trying to come to terms with it and the changes incurred. What meds are you on? They’re another one to get used to as well!!

[M3LZY in reply to Rarity1]

No meds at the moment

[Chris-Bromsgrove]

Certainly something like a bad virus can be the trigger that can start your immune system behaving strangely and attacking self. In my case I'm pretty sure it was a bad cold that triggered my vasculitis. Research has also shown that there is a genetic link. It's like cancer where some people can be genetically predisposed to be at greater risk of getting it. The good thing is that it is treatable but it is important to get the right treatment as soon as possible. Make sure you have been referred to someone experienced at treating vasculitis.

[M3LZY in reply to Chris-Bromsgrove]

I went to see a vascular consultant privately. I was told it would go on its own....? I'm not so sure it's effected all of me. I'm concerned about my heart how erratic it can be... it's knocking my confidence. Which is embarrassing to say. I had covid March 2nd. April 23rd onwards suspect arm clot, suspect heart attack and sus TIA. Possibly ptsd linked in to. Worse 4 mths of my life. I just want it to turn around. How are you coping now?

[lesleyg in reply to M3LZY]

Hi I have a type of Vasculitis (Behçet’s) and am in Australia. I’m not sure of the data now but it used to take 11+ years on the average to get a diagnosis, which was certainly the case for me. Unfortunately I had to spend a lot of money going to private consultants until one day a lovely Irish doctor (working in the public health system) recognised it the first day he saw me. My way of thinking was that financially I had to weigh up how much my health and in my case ultimately my life was worth. As someone on here said doctors are learning so much at the moment. How can he say it will just go away? I’m afraid you are going to have to “do the rounds” (until someone will listen to you). I do have a good rheumatologist now, but he says he wishes he had met me a lot sooner and was able to treat my symptoms differently. BTW prednisone has it’s side effects however it could make the world of difference now to getting your symptoms under control as has been mentioned . Welcome to the club. This is a great support group. 😊

[Hidden]

Check out earthing there is earthing movie out as well made a huge difference for me ! Hope you feel much better soon ♥️

[M3LZY in reply to Hidden]

Sounds interesting

[M3LZY in reply to Hidden]

Sounds interesting

[P123sue in reply to M3LZY]

Hi welcome ,sorry to hear your story.The good news Is you will find help and support here and on the vasculitis uk Facebook page. It is a difficult one because you can look ok but feel terrible. Look in to the condition and see what works for you if you need to have a rest then you must . I was coming home from work and cooking tea and then going to bed I was so exhausted in the beginning and you will throughout this journey find that people in your everyday life who do not have vasculitis or have heard of it still feel qualified to pass opinion, but the only person you need to listen to is the doctor and what your bodies telling you. . Remember that you are your best advocate. You will meet new people here there’s great advice , and also there’s a vasculitus green fingers an fun craft page where people share other things like crafts and pet stories it’s like a online community so try not to worry to much there’s always people who are happy to support you as they have been through it keep smiling and be positive tc x

[lesleyg in reply to P123sue]

Hi Sue where is the Vasculitis Green fingers and fun page? Sounds interesting.

[P123sue in reply to lesleyg]

It’s on face book it’s called vasculitis - green fingers food fun and hobbies of all sorts

[lesleyg in reply to P123sue]

Thanks! 🌻

[M3LZY in reply to P123sue]

Not liking how I am today. Hand cramps back. Left arm squeeze. High or sudden low heart rate. With a few pains over my heart that come and go.

[Galaxy2]

Welcome to the group, loads of good advice you’ve been given so far.

I know it can be quite overwhelming coming to terms with it all but with the right treatment it can all get so much better.

My vasculitis has caused autonomic nerve damage which can cause heart rate increases, blood pressure irregularities and affects breathing amongst other things. If that hasn’t been mentioned it may be worth mentioning it to your specialist. My body also overreacts to temperature changes. With the heart rate increases it’s like my heart rate increase is exaggerated to whatever activity I’m doing, just going from sitting to standing can cause a big increase and any sort of light exercise or cleaning for example makes my heart rate race as if I’m out on a run, the same if I’m anxious. Autonomic nerve damage can often be associated with peripheral nerve damage too which may be causing your pins and needles.

I hope you get some treatment soon which helps and get some answers too

[RiviS7 in reply to Galaxy2]

Hi Jenny, what type of vasculitis do you have?

[Galaxy2 in reply to RiviS7]

Hi, my vasculitis is a secondary auto immune disease as a result of having Sjögren’s syndrome, it affects me mostly neurologically

[M3LZY in reply to Galaxy2]

That's interesting. I now have hollows between my forefinger and thumb. This happened after hand and arm cramping. My left hand is really bad. I shake some days from the base of my skull to my arms, hands, legs and feet. And yes temp changes and sometimes small movements fly my heart rate up. I aso get burning feeling over my heart area inside. Stinging under clavicles. Bottom lip tingles as well as chin. And hands and feet.

[Galaxy2 in reply to M3LZY]

What type of specialist are you seeing? Sometimes it takes a while to get to the bottom of it all and to piece it all together.

[M3LZY in reply to Galaxy2]

I've seen a vascular consultant. They've said vasculitis from covid. And it will go on its own. I'm really not sure as I'm struggling bigtime.

[Galaxy2 in reply to M3LZY]

It must be very hard for you and I suppose the experts are still very much learning about long covid but take heart from them saying that the vasculitis will go on its own. I noticed in one of you posts that you said you get ectopic heart beats, I do too and one thing I've learnt there is try not to worry when they start (I know easier said than done), they used to frighten me so much when I first had them, they could be so strong but I'm sure they got worse from me panicking. If they start now I just change position and they normally stop, lying on my back or left side is often a trigger. Like I said though saying try not to worry sounds easy in practice....

[M3LZY in reply to Galaxy2]

Thanks Jenny. I was sinus tacicardic with covid originally as well. I seem to get sudden drops in heartrate too. It's certainly done a number on me. I just want to regain some weight.

[lesleyg in reply to M3LZY]

I was very confused but it seems that it is a rheumatologist you need, not a vascular consultant. I ended up in Emergency in New Zealand (taken off a cruise ship with sepsis pre Covid). A cheerful young doctor from the UK told me that rheumatologists tended to be very nice people but the kind of doctor you saw after trying everything else. As they say never a truer word spoken in jest.

[ANCAShock in reply to Galaxy2]

Gosh I’ve had heart rate rush on bending & going upstairs but not doing dance class, which is odd. I’ve never heard of autonomic nerve damage, must mention to my consultant

[M3LZY in reply to Galaxy2]

I've possibly replied before but this makes complete sense. Do you get hand cramps and chest pains. And sometimes lower drops in heart rate. And a sore mouth and gums.

[Devoid]

Hi I have vasculitis not from covid but just to let you know that I experienced so many of the symptoms you have described and particularly that the pain and sensation move around. How are you being treated? I really didn’t see any improvement until they started tocilizumab, now off steroids and feeling relatively well. Please feel free to ask if you think I can offer any help.

[M3LZY in reply to Devoid]

Can I ask do you get any swelling of your central torso which hurt.

[Devoid in reply to M3LZY]

Hi I was very swollen but that was with the steroids until I adopted a low carb diet.At it’s worse it would have been far easier for me to list where didn’t hurt rather than where did! . Like others have said it does seem odd to suggest vasculitis just from a blood test and odder still to not treat . I had a cat pet scan to confirm diagnosis but was put on steroids from the blood results

[M3LZY in reply to Devoid]

It all feels sketchy to me to. Consultant didn't seem to hang around. My arms were scanned which showed significant difference. Right was 87/125 the left 91/165. But was never explained to me. Just that my arteries were o.k. I agree with pain mine seems to move around a lot. And has favourite areas... 😪 my nails and hair are the only areas pain free I think... 🙄

[Hidden]

Good morning. I cannot see any rheumatologist saying vasculitis will go away on its own. You say you went privately did you check out this person before seeing him. And you have had no treatment I don’t understand why your local hospital is not involved with your care as either an inpatient if your condition requires your admission or as a patient on the day unit. Can I ask you how where you diagnosed and Are you ANCA positive. I myself was diagnosed in April and spent 15 days in hospital following an emergency admission and was quite ill. The treatment I have received both as an in patient and day patient has been intense. My consultant and his team are brilliant and I have so much to thank them for. I retired a number of years ago having worked for the nhs as a senior registered nurse and it concerns me that if you do have vasculitis you need treatment. Who diagnosed who you. Take care

[M3LZY in reply to Hidden]

It was through a vascular consultant. He said he could tell by my white blood cells. But because it's post covid related it will go by itself. And to take iburofen. What concerns me is the chest and arm pain I'm getting. Also night sweats. I feel between a rock and a hard place.

[Hidden in reply to M3LZY]

I feel you have been given some very conflicting information by the doctor you consulted. Raised White blood cells on their own cannot give a true diagnosis of vasculitis there are other more detailed blood tests that can support a diagnosis of vasculitis did you have your CRP level checked. If you are recovering from covid there are the long term covid symptoms to consider

Plus your symptoms are very similar to Fybromalgia but again very difficult to diagnosis and doctors will diagnosis I. Patients symptoms as there are no known blood tests Etc that can diagnose Fybromalgia. During my nursing career I have nursed several people with Fybromalgia - -all females in their late mostly 40 plus when their symptoms started Sadly all suffered with chronic depression the depression coming before their symptoms and these ladies needed a lot of support in many different ways from various health care professionals. I can only advise you to book an appointment with your GP practice with one of the GPs who has an interest in pain management

Vasculitis is a terrible disease not to be taken lightly i as I said I tested very very strongly on admission to hospital

ANCA Positive PR3 and if you are ANCA associated vasculitis there are 3 different vasculitis conditions that target different parts of the body.

I have GPA which targets my lungs kidneys sinuses and for me my mouth as well. On admission I had bleeding in both lungs plus a pulmonary embolism a clot on one of my kidneys plus nose bleeds and the nastiest raw mouth ulcer plus a lower body rash I was ill. My CRP level was 468 and I felt so ill I was told I needed urgent treatment and I ask myself now without that treatment where I would be now I am extremely lucky and blessed to have a excellent supportive consultant along with his team plus I have to acknowledge the expertise and kindness of the respiratory consultant whoSo took care of me. I have to say I do not have a lot of faith in any of the GPs at my surgery and I only hope I do not have to rely on them for anything to do with my care.

I only hope your GP is better and carries out further investigations for you. Could you take a friend or a family member with you for moral support. I hope you aren’t offended when I say

You sound depressed and extremely anxious about your condition which is understandable

Take care and go see your GP

[M3LZY in reply to Hidden]

Hi, I'm in no way offended. I am depressed and anxious. A lot is through the physical pain I'm getting. I'm trying to keep mobile but I've lost a lot of muscle and body fat regardless of eating. My elbows and knee joints, jaw are agony at the moment. Chest stinging is terrible. Just don't know what to do.

[EGPAGuy]

I am amazed you saw a Vasculitis specialist who diagnosed you with Vasculitis..didn't specify which one and then sent you off without treatment. That must be awful.. I have most of your symptons as many on this forum. I would suggest Vascular versus Vasculitis here are not the same and would urge to to see a specialist. There are specialists your GP or local hospital can refer yiu to to in London and other parts. At the very least you need to see a rheumatologist and nephrologist. People can suffer years before getting diagnosed. Sorry you have joined this crappy club but please please get your gp to refer you on. You needn't suffer like you are.

[M3LZY in reply to EGPAGuy]

I'll try but my energies are running low.