Vasculitis UK

Is this a Relapse?

Quick recap. Diagnosed with MPA Wegeners in Oct 2015 and put onto Prednisolone and Mycophenolate. Prednisolone was reduced and stopped by early 2017 but continued on MMF 2 x 500mg morning and 2 x 500mg evenings.

After bloods being monitored monthly and stable results for all the rest of 2017. Then into Oct. 2017 and was happy to hear that the Doc was going to reduce the MMF to 1 x 500mg morning and evening, and I was fine all through. Then Dec. 2017 reduced to 1 x 500mg daily until mid Jan 2018 when I was to stop altogether, no adverse health issue so far.

Then about mid Feb I started to have a dry cough, didn't take much notice because lots of people have a cough this time of year!

Problem is its now almost April and I am still having cold and flue like symptoms! I have had joint pain In my arm, sometimes the right and then the left, very sore to twist my wrists for a day or so then it goes. But what gets to me the most is lots of sneezing, blocked sinuses and still this dry cough.

I have been to my GP who promptly sent me for a chest xray and that showed an infection so I was put onto anti biotic's, they didn't work so I was given a second course to try and dry up the sinus issue.

I am now waiting to get to see the Rhumy. and see what the next plan of action is going to be as I still have no improvement.

I was wondering if anyone can shed a light on whether this is a relapse so soon after stopping the meds? And when I get to see the Rhumy what questions I should be asking?

Cheers all and hope things are good for you.

18 Replies
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Hi Tisme2

When I get a chest infection I normally increase my prednisolone for a short time to help my body get over it. If i were you I’d ask to be referred to your rheumatologist asap - do they have a helpline? . You may have reduced your medication too soon? Has your doctor taken blood tests to try & see what is going on for you?

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Hi Katie.

Thanks for your reply and I shall follow with your advice and take some prednisolone now until I get in to see the Doc again. I have found some old stock in the cupboard to tie me over for a few days!

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I don't think you should take prednisolone on your own. It has to be tapered down as you know and you might not have the right number of pills to do that.

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Hi 5marcy5

Yes your right and I understand what your saying about tapering. I have enough tabs to keep me on a small dosage until I get the appointment and will hopefully by then have the docs advice with further blood tests to reduce them if possible.

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A blood test to see if the eosinophils blood cells are jumping is CRUCIAL! I have EPGA & was on MMF for yrs along with Pred. I’ve managed to very slowly reduce MMF & finally stopped it in Dec, having started MEPOLIZUMAB monthly injections back in May. I am VERY closely monitored by Respiratory consultant for EPGA as well as the difficult Asthma which is part of this, with strict fortnightly bloods to monitor eosinophils numbers. If these are jumping, it would indicate you are having a relapse & this must be jumped on FAST! Be firm with your GP til you get your Rheum appt. Don’t let it be overlooked, as it can get a grip easily & be very hard to get under control. Good luck!

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Hi Sparkimoore.

When my GP sent me for the xray she also had my bloods checked and they show a rise in the inflammation levels and an increase in ANCA levels too, that's why she has been trying all week to get me an urgent appointment with Rheumatology, this has been since last Monday, but even the GP has been told that the secretary is away until after easter so now have to ring from next Tuesday on!! The GP has been great ringing the hospital everyday but without success until apparently the Rheumatologist's secretary has had her Hols.......couldn't make it up could you!

Thanks for your response and my good wishes to you for the future.

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Your GP should get you back on the MMF in the meantime, then you can relax a bit cos it’s suppressing the eosinophils, which is what you need. I know it’s a horrid drug & ive has terrible side effects with it, but I would have died without it. Be strong, be firm with GP too.. She can start you back on the MMF.. She can prescribe it while you are waiting for that appt. Good luck. Keep in touch. I’d like to hear how you get on.

Rose

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Hi.

While I'm waiting for this appointment I also have a quantity of the MMF tabs from when I stopped, so I have already started to take one in the morning and again in the evening to protect the CKD caused by the vasculitis.

My GP has said that they are not allowed to prescribe MMF it has to be done by the Rheumatologist from the hospital for some reason! that's another reason I'm hoping for an appointment asap, I should find out by next Tuesday when I can get in!!

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Oh, I’m in Jersey, so you lot are lagging behind!! I initially got MMF from Consultant but it was put on the General GP list several years ago. Yes, certainly, you are doing the right thing by taking the MMF you have left. The Rheumatologist should be able to at least issue you with a Hosp prescription for more until you are able to see him in clinic. If the worst came to the worst, hi dose Pred will have the same effect but your GP would need to decide on the dose.. You’re doing the right thing. This is a NASTY disease & they don’t tell us much about possibility of relapse. This is what I am anxious about. ( My friend who wasn’t immune suppressed while they dithered about did she/did she not have Churg has now been given 6 months to live. SHOCKING.., What does CKD stand for ? ( We have a different kind of Vasculitis.. I saw it on Mystery diseases on Sky Hone & Health. GP hadn’t seen it since medical school over 30yrs ago & consultant wasn’t even aware!!!)

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CKD stands for chronic Kidney Disease! It damaged my kidneys down by 50% so I have to take good care of what’s left.

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Only an experienced doctor should be advising you as we all react differently to treatment. But I would suggest a Dexa Scan as prednisolone caused me todevelop osteoporosis.

Rita

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Hi Rita

I’v had one and all is ok thank god.

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Hi Tisme2 how are you ? Hope better. Which type of vasculitis do you have? Mpa or Gpa?

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Hello Wizzi

I am still waiting for an appointment but can’t get one until after bank hols now!

MPA is my condition.

All the best to you.

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Finally got a telephone call today from my Nephrologist who has now seen the report about the last bloods taken and picked up on the raised ANCA and inflammation levels. I was actually doing a small shop when he rang so had to discuss things in the shopping aisle's!

Anyway, I am to pick up my prescription from the hospital to re-start the MMF and Prednisolone now in the morning and even though I am disappointed that the drug free period only lasted a couple of months, at least treatment starts again tomorrow!! Back onto 2 x 500mg AM and again PM and 20mg of Pred. daily.

OH well that's the nature of this bloody illness I suppose!

I have found all the comments helpful so thanks, good to know we can share our troubles.

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Hi tisme2, I'm sorry to hear that. I'm hoping this treatment will send you into a lengthy remission. Keep well :)

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Hi tisme2

I have recently went through something very similar. Diagnosed with Wegeners 2017. Currently on Azathyoprine and prednisilone. Was reduced to 5mg prednisilone in November. January started to get cold symptoms, blocked and running nose, itchy and painful nose, pain in joints in fingers, loss of hearing in right ear, sore heads and shortness of breath. Blood tests showed anca moved into positive for the first time. Consultant upped prednisilone to 30 mg per day and has now told me to reduce by 5mg per week back down to 5mg. He advised it is a suspected flare in the form of nasal vasculitus and currently waiting for appointment with ENT consultant. Since upping prednisilone symptoms have much improved.

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Hi stuc.

Yes your symptoms do sound just like the ones I had, I too had the sinus issues and also had very dry eyes together with lots of sneezing, blocked nose, dry cough and joint pains.

I have now been taking the MMF and 20mg Prednisolone for nearly a week and feeling bit better now!

I am hoping that once I get to feel well again that they will again start to reduce the meds but this time do it much more slowly and maybe that will work better?

All the best to you and good luck with your ENT appointment.

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