MPA

[kate48]

I saw the Dr at the hospital and asked which type I'd got, he couldn't say for definite but they were thinking it was MPA.

I've had strange sensations in my feet and weakness in my legs, for a while now, they said they would do some nerve tests

I've been on cyclops and steroids every two weeks for 6 weeks, the last treatment was delayed cause I'd got a kidney infection. Now I'm every month for 3 months

I've also got a strange smell in my nose, it's not there all the time but every so often I get this strange smell, could it be the Cyclops and steroids IV

If you have MPA It would be good to hear from you

[LynneJ Vasculitis UK Volunteer]

Hi Kate

There are a few of us with MPA.

If you look on my profile you will see my posts and story.

I would add I am a lucky one I am now in remission but still on Azathioprine. So far so good!

If I can answer anything do let me know.

Lynne

[kate48 in reply to LynneJ]

Thanks Lynn

[Ayla Volunteer]

Another MPA-ite here, Katie. There are quite a few of us around. I was diagnosed in 2003 and am in chemically induced remission, taking low dose steroids and mycophenalate myfenax.

Can you tell us which hospital you are under and which specialist or specialists you see? When you say your medication was administered every two weeks and is now every month, do you mean it is a daily dose which is now reducing? That is the normal practice but, if you mean that treatment is paused, then restarted weeks later, that would not be normal. Can you tell us more about your drug regime?

Odd sensations in your feet and legs are common with MPA. Usually described as severe tingling (on fire) and numbness, or a sensation like your feet are wrapped in cling film! Muscle weakness is common too, but it can be a result of the medication. Strange smells I am not so sure about, anyone else had this?

I hope you get a definite diagnosis soon, keep on asking the questions, both here and of your specialist. It is also useful to look at the Vasculitis UK website, lots of info on there and, perhaps, order a Route Map which is the definite guide to vasculitis in all its forms. That will answer most of the questions that come up and will arm yoi with a basic knowledge that will prove useful. It is really important to learn as much as you can as you will find you are a rare bird!

Ayla

[kate48 in reply to Ayla]

I'm at Sheffield Hallamshire, I see Dr Akil

He said I have cyclops and steroid IV every 2 weeks for 6 weeks, after that I will be on every month, after that im going on mycophenalate tablet

My medication is through IV, they had to delay it cause I had urine infection,

Now I have the treatment once a month for 3 months

I'm still unsure about it all Thanks for reply

[Ayla Volunteer in reply to kate48]

Thanks, Kate. Have just been reading some of your past messages on posts here and there was talk of you possibly having Takayasus? Has that been ruled out in favour of MPA then? Do you still have no pulse in one arm?

What I would still advise is reading lots about vasculitis, asking qus here and on the facebook site, reading the Vasculitis UK website and Route Map info, anything to get yourself up to speed on your illness, whichever it turns out to be, so that you become your own expert and advocate. Only then will you know if you are getting the right diagnosis and treatment and whether you are happy with your current specialist care. I am not saying there is anything wrong with it, but when we first come across this 'unheard of up until now' illness that we've got, we tend to rely on our medical carers and yet they are sometimes out of their depth.

Keep asking questions and, above all, keep an eye on how you feel. How you feel is the most important thing of all, a reliable indicator of when something needs attention.

Ayla

[kate48 in reply to Ayla]

I still have a missing pulse in my right wrist, I think that's why someone thought I'd got Takayasus

I was told it was systemic and it affects the smallest veins, capillaries

When it all started with sudden severe Raynauds I never thought it would be as bad as this.

[Ayla Volunteer in reply to kate48]

The good news is that, whichever form of vasculitis you have, the treatment is likely to be the same and you seem to be getting that! It is important that you have a correct diagnosis, though. The lack of a pulse seems to point to Takayasu.

Takayasu affects the large blood vessels, MPA the small ones but I have never heard of anyone with MPA having a missing pulse. Perhaps someone else reading this has?

Do you have a rash or ulcers? Apart from blood tests, have you had any other tests? Do you see your specialist again soon? Has Takayasu arteritis ever been mentioned by him? Would recommend reading Vasculitis UK's information on Takayasu and MPA and then getting ready a list of questions!

Ayla

[kate48 in reply to Ayla]

Hi Ayla, The first symptom was Raynauds which was sudden and severe, this was back in September, I was quite poorly with it, no appetite, lost loads of weight, pain, ulcers at tip of 4 fingers, which went gangrenous,

Night sweats, tiredness, missing pulse, weakness in legs, strange sensations in feet, cough no pulse in right wrist etc

The tests I've had are 100s blood tests, MRI, X-rays, ultrasound, Pet scan, angiogram,

I was admitted to hospital in December, and had a iloprost infusion, which opens up capillaries, veins etc

[RosieK in reply to kate48]

My left radial pulse is absent. Has been since I was diagnosed in 1966. I have Takayasus . I was in hospital for 1 year on and off when I was first diagnosed , while they tried to find a way of helping me. They didn't think I would survive.

Been on steroids 50 years. High dose to begin with, but tapered down . I do have to have it increased from time to time if I get flare ups . I would like to hear from other people who have Takayasus , to compare notes

[BronteM in reply to RosieK]

Really interested to hear that you have lived with this for so long. You must be pretty strong basically! I had Takayasu's diagnosed just over two years ago after more than two years of feeling increasingly fatigued and achy, losing the pulses in both my arms and developing increasingly variable blood pressure. Should have told my GP about many other symptoms too, but some were just too weird. Last summer I had new scans to see how much progress I'd made after 18 months of treatment. The flow in the arteries in my arms and shoulders had only improved by about 20 - 25% so the rest of the blockages must be scarring and have taken a long time to build up. My consultant says that I must have had the condition at a low level for quite a long time. Now on steroids and rituximab....and finding it very hard to get below 5mg too.

[miss-scarlett]

Hi Kate I have been newly diagnosed with wegerners and I get a strange smell in my nose before I started medication. I also have muscle weakness and nerve problems in my feet too feels like I am being electrocuted! Since being on steroids it has eased off to annoying burning and pins and needles. Good luck hope they sort it out for you. Sorry I cannot offer you any help or advice as I am still learning things out myself.

[kate48 in reply to miss-scarlett]

I'm the same I was diagnosed with Vasculitis was in January,

The smell I get is a chemical smell, and can get really annoying

Hope everything goes ok with you, what treatment are you on?

[miss-scarlett in reply to kate48]

Hi Kate, I kept thinking that everyone around me smelt funny then I realised it was my nose. At the moment I am on steroids and have just started my first cyclophosamide treatment this week, I also use a nasal spray from the ENT doctor but that does not get rid of the smell either. It woud be good to know if anyone can figure out how to get rid of it, as I am now convinced that I smell lol.

[lnem]

Hi Katie. I have WG and like yourself have a strange chemical smell every so often. I take Mycophenolate ( Cellcept ) and steroids as well as other meds and was beginning to think I was going nuts. Sorry I can't say what it is. Maybe if you find out you can post again. Hope all goes well with you. Best wishes Geraldine.

[kate48 in reply to lnem]

At last someone else with this strange chemicaly smell,

I think it might have something to do with steroids which I have through IV

Hopefully we will find out what it is....take care Kate

[Bill1959]

Good afternoon

I also have the strange chemical smell its like a tinny smell . I first had it before I was diagnosed with Vasculitis . I thought it was coming from near by workmen . When I got home was still there . I still get it 4years later . It some ties that bad you can taste it not nice

Cheers Bill

[kate48 in reply to Bill1959]

Hi Bill, I've only just been diagnoses as having MPA, the smell drives be nuts, it goes away for so long and then it's back, at least I'm not on my own

Kate

[Bill1959]

Hi Kate if you do find out anything would be interesting to find out what causes it.

[EbonyWillow]

I have CSS, diagnosed 2004. I noticed a strange unpleasant smell first in June 2011, usually when upside down (yoga, nothing weird!), and when bending over to see to my small dogs. Nothing was done about it, although the Rheum Spec Nurse said we might have to refer to ENT, and I learned to live with it. But eventually, sinus/rhinitis problems, which had become very bad, were investigated - just last week - and nasal polyps were found. One week of nasal drops later, and I am feeling much better, breathing through my nose, smelling pleasant things, tasting and hearing better. And it was a fellow sufferer who suggested nasal polyps, not the hospital, and that had started me asking questions. May not be the answer for you, but certainly worth asking the question of your Consultant. Hope this helps.

[kate48 in reply to EbonyWillow]

Hi, it's worth looking into, will ask them on Thursday thanks...kate

[BronteM]

Hi Rosie,

That all sounds pretty tough, but fantastic that you had your two daughters. It's also very reassuring to hear about someone who had coped with this for so long. Being seen by students has always seemed an interesting role. Several arrived when I was first diagnosed to listen to my 'bruits' and a friend's daughter passed a medical exam as she recognised a Takayasu's patient when no one else did!

[sreblem]

Another MPA here. I think the strange smell is caused by the steroids.