Could this be vasculitis

[Bradleysnan]

Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot patches that suddenly appeared on both lower legs. Was given steroids and rash/red patches went after about 7 days. Suddenly reappeared yesterday along with flu like symptoms and covered a larger area. Given more steroids and antibiotics by doctor at out of hours surgery along with a list of blood tests which I have been told to insist my doctor carries out tomorrow. He did mention vasculitis so have researched and found this wonderful website. Any feedback will be very welcome.

[Jann]

Hi Sound very simpler to when I believe my Vasculitis first started showing symptoms. I was given antibiotics and as they thought it was an allergy then something in case the rash can back. Twelve - 18 months later I was was in hospital with my kidneys functioning at 11%. So I recommendation is keep pushing to make sure you have a complete diagnosis one way or another. If it Vasculitis you need to have the right med and sooner rather than later and be under regular medical review.

Good luck

[Bradleysnan in reply to Jann]

Thank you Jann. I already feel better for joining this community. Feeling a little bit overwhelmed.

[JacquiM Volunteer]

Hello, I'm very similar to Jann but, thankfully, I did not have to wait 18 months but the result was the same as my kidneys had already been badly damaged by the disease.

I agree in that you should keep pushing for a diagnosis or asked to be referred to a hospital that has a vasculitis specialist as soon as you can.

Good luck

Jacqui

[Bradleysnan in reply to JacquiM]

Thanks Jacqui, Just a thought ... suddenly 2 years ago I developed extreme breathing difficulties, have since been in inhalers for prevention and treatment and have read that vasculitis can affect lung function. I think I will check with doctors if this is coincidence as I have never before had trouble in this area and have never smoked.

Suddenly the breathlessness could make sense.

[HiveMind in reply to Bradleysnan]

Your symptoms sound very similar to mine, before I was diagnosed. I have Chug-Strauss Syndrome (CSS).

CSS is characterised by late onset asthma (I'd never smoked or had previous respiratory problems either), rashes, swollen joints etc. If you have CSS your eosophinils (inflammation markers In the blood) will be raised significantly (determined by a normal blood test).

Like others have said, INSIST on being tested for Vasculitis. My diagnosis nearly came too late.

[HiveMind in reply to HiveMind]

Oops! Should read CHURG (not Chug) Strauss Syndrome.

[JacquiM Volunteer]

Yes, some Vasculitis can cause lung problems. If you are not satisfied with your doctors, it won't hurt to get a second opinion in my humble opinion.

Jacqui

[AllyGY2013]

My illness started just over a year ago with a recurring chest infection and cough that just wouldn't go away, I became breathless when moving around. Then I was in so much pain in my joints I cried with pain, rheumatoid arthritis was the diagnosis, then a facial rash appeared, diagnosis changed to lupus, then after many blood tests, urine tests, xrays and chest/abdomen ct scan had diagnosis changed to vasculitis.

I still have breathing problems, purple spots/patches on my arms, intermittent facial rash and pain in my chest when taking a deep breath and many more symptoms which make the consultant and my GP believe it to be vasculitis but as many people will tell you it is a waiting game to find out exactly if and what type of vasculitis you have, or indeed what secondary complications you may have also. It is a process of elimination.

I have had to learn patience.

Make sure you know all the symptoms you have and tell the doctor. I was getting night sweats which I put down to fighting the chest infection or my age but in fact was a symptom of this disease.

Welcome to the group, I'm sure, like me, you'll find it invaluable.

[Bradleysnan in reply to AllyGY2013]

Thank you so much, I will definitely be using this site regularly.

[JontyW]

Based on what you have told us I would say this is almost certainly vasculitis, and so your out-of-hours doctor was smart to mention that as a possibility.

My extreme and widely varying symptoms of vasculitis (breathlessness, lesions over my hands, rash on lower left leg, swollen lower left leg/foot, painful leg muscles, numbness on thumb and nasal crusting) started 12 weeks ago but antibiotics did no good. But I was really lucky that 3 weeks later I had a chest consultant follow-up appointment due to a blood test taken whilst in hospital when the breathing got worse, showing a raised eosinophil count. When he saw all my other symptoms he knew it was probably vasculitis straight away and ordered a full blood test, which then showed a high CRP level (C-reactive protein is produced by the liver and the level of CRP rises when there is inflammation throughout the body).

So I was put on 30mg daily Prednisolone and also Mycophenolate (CellCept) an immunosuppressant. And a biopsy taken from my leg two weeks later then confirmed it was vasculitis.

Status today, 3 months later:- much improved ....

Medication:

- steroids reduced slowly down to 10mg and need to stay on CellCept for a total of 6 months

Symptoms:

- lesions all dried up, breathing getting better each week (it improved a lot in first week of steroids), swollen legs/ankles/feet now gone after taking diuretics (Furosemide), leg muscles now OK, nasal crusting not so severe but still evident, thumb numbness still evident. I also suffer cold feet on some days, even though it is warm outside.

Just returned from a four day break in our touring caravan in the New Forest and breathlessness is the only problem that I experienced, so my wife had to empty the heavy chemical toilet :-(. I have no pain anywhere and think I'm really lucky it was diagnosed so quickly and that I seem to have a mild version of CSS (Churg Strauss Syndrome) .. so far ... since it seems only my lungs that have been affected. I'm just hoping that the ongoing steroids will continue to improve the breathing on exertion and I can get my walking boots back on again! Due to see the chest consultant next Mon and also the rheumatologist that I'm under, next Wed .. fingers crossed!

Just to confirm what others have said .... I suspect the blood test will show raised values of CRP and eosinophil, if it is vasculitis. If confirmed you need to be started on Prednisolone asap before any further damage is done. An immunosuppressant drug should also be started to calm down your immune system.

Best of luck, and please let us know the outcome ..... JontyW

[Bradleysnan]

Thank you Jonty. My GP was brilliant today. All blood tests now done and another appointment made for two weeks time. I will post results when I get them.

Thank to everyone for responding.

[AndrewT]

Think I do remember commenting on this, or something similar, not long ago. Let me know, if not, and I'll do my best to remember quite what I said!!

[Bradleysnan in reply to AndrewT]

No Andrew, yesterday was my first time on the site.

[AndrewT]

Dear Bradleysnan,

Sorry I must have you confused with someone else. This proves two things, for sure, the first is that problems like yours have been posted before and secondly that I'm a silly forgetful old man! In the first instance if you can look back over some of the previous answers, that may be of help to you. Secondly take no notice of idiots like me!

Seriously though situations, rather like yours, have come up before certainly and, I hope this site is of benefit. Notwithstanding the odd twit, that is!

If I can be of any help please do reply

Best wishes

AndrewT

[Bradleysnan]

Thank you Andrew, once I get my blood test results I'm sure to be asking more questions and for advice.

[dskizs]

Bradleysnan and Andrew that was me that posted Melinda (dskizs). I had the same situation of chest and sinus colds. Actually 10 in 1 one year and 8 different antibiodics. High ANCA score and asthma, now asthma is gone I had nasal biopsy done last Wednesday and will have results Monday. Unfortunately I am USA citizen living and working in Germany but have just arrived in USA for summer. Will receive diagonisis while in California. Anyone know of a good doctor near San Diego? Yes we are both very lucky we found this community. Even though both doctors I have be seeing say they do not believe I have CSS they are going to the limit in testing and blood work to find the answer.

[Bradleysnan]

Melinda, I hope your tests give a good result. I should get my results 8th July so will post then. I would never have thought that asthma symptoms and a rash on my legs could be related, strange how the body works.

[dskizs]

Good luck and I am still waiting. I am in USA and the doctor said he would send email with results and if need be medication prescription and infor for USA doctor to begin medication. The waiting game is so hard. I had the biopsy done a week ago so it should be done. I guess I will call today. It is scary, I want to know but I don't. Keep us posted and I will too.