Meds side effects

[NanaB43]

I have been taking Cell Cept, predisolone and Omerprazolone amongst other medicatin for the past eight years for GCA and PMR  I have recently had a flair and other problems are being investigated  I have been told to reduce predisolone, stop cell cell cept and stop omerprazolon, I had to have an infusion of magnesium and calcium as the Meds had caused my levels to go very low, just be aware this can occure 

[piglette]

If you have just had a flare I would have thought reducing the prednisolone for the moment is not a good idea as it could cause more problems. You need to get the inflammation under control first.

[NanaB43 in reply to piglette]

I am concerned about that, but as I have to have some investigations and they think the steroids will give false readings there is no option, got to do what my rheumatologist recommends, but he is keeping a close eye on me. 

[Hidden in reply to NanaB43]

And this hospital is which one?  😓

[NanaB43]

Hereford County Hospital, Herefordshire, they have found something in my lungs, I have had a broncopsky and a ct guided biopsy but they have not managed to get any result as to what it's is  another ct guided biopsy has been scheduled but as I had an infection after the last one I am loath to go ahead, but I need an answere  

[Jools52 in reply to NanaB43]

I also have my lungs affected and have rigors and then cough blood. I've had 3 CT scans and Bronchoscopy with a lavage that showed clear. The inflammation comes and goes so it's been very frustrating as I am not well but getting a definitive diagnosis is so difficult. Right now I am down as having generalised ANCA positive small cell vasculitis. I am on prednisolone, azathioprine and other drugs. It seems crazy to have you not have anything to find out what's going on. It would seem dangerous to me. Maybe ask for a second opinion as I am doing that. 

I have the lung and respiratory specialist involved now. Good luck fella as I know how frustrating this can be. 

[jinasc in reply to Jools52]

Jools are you seeing a Vasculitis Consultant as well, if not, why not?

[Jools52 in reply to jinasc]

Hi Sambucca,

I see the rheumatologist at Southmead hospital in Bristol. His name is Harsha Gunawardena. I am also seeing respiratory specialist and heart specialist plus now adding in the eye specialist. I have now started the process of getting referred to one of the vasculitis,specialist clinics so I hope to be referred to London, Birmingham or Addenbrookes but I have not had a reply as yet. I keep being told my case is very complex so it can be very frustrating. 

While this is going on I am just trying my best to get on with my life. Some days this means I stay bed bound and others I can get a little bit done. I've had some very strange symptoms of late but a part of me has kind of just let go. I know it sounds daft but the constant hospital appointments and worry have seemed to make me worse. I am told they hooe to soon offer me a cold biopsy ? Apparently they saw this done in Dublin and hope to offer it in Bristol soon. The hacking up of blood always worries me but no one seems to be able to actually do anything about it. 

[BooBoo39 Volunteer]

Hi... What level of Prednisolone were you taking and how long have you taken this particular dose please?

[NanaB43]

I was diagnosed with GCA and PMR eight years ago and started on 60mg prednisone with other Meds, overtime gradually reduced, with a couple of flairs and increases. Last August I got completely off prednisone, a very slow reduction, this lasted until February when I had another flair and was put back on 30mg now down to 20mg next week 15mg, hope this answers your question. Please be careful if you take omerprazolon