Bad time since December

[Oddmanout]

Very much like a similar post I read this morning, I've been going through a bad time since December having had PMR and large vein Vasculitis for over 5 years. Prior to December I was on a 'good run' feeling quite strong and enjoying my choir singing. I developed a cold over Christmas and things changed a lot. Since then I've had this constant cough which is worse than ever now. The GP gave me a weeks antibiotics but nothing changed. I have no energy and find the simplest physical tasks overwhelming. I thought I was going to pass out recently during a walk involving a moderate climb of just 150 yards. I'm in bed usually at 9:00pm or earlier and rise at about 7:00am with plenty of toilet visits throughout the night, but generally good quality rest and sleep. I have been on 5mg Prednisolone for about 12 months and also take Methotrexate and Leflunomide. I see my Rheumatologist very soon where I will have my bloods checked. The GP do my bloods every 2 months now, but they seem to keep missing CRP, but they do ESR. Sorry about the abbreviations. All I know is that they are inflammation markers. I have had to stop the choir attendance and limit myself to very small tasks around the house, anything more than that gives me terrible pain. My wife has got her beady eyes on me so I daren't do too much. Any advice would be welcome. Thanks.

[Obscureclouds]

Sorry to hear you are feeling so unwell as it’s so frustrating when you can’t do even the basic things you want to do. I usually find antibiotics make me feel even worse. As for the blood test I usually check with who ever is taking mine that they are covering all the important things as on an early test a few things weren’t included that normally were. I always mention CRP as I like to know it is remaining stable and at one test as I had recently started taking a low dose statin I asked her to make sure cholesterol was included. They have always obliged

[Oddmanout in reply to Obscureclouds]

Thank you.

[DorsetLady PMRGCAuk volunteer]

At 5mg the fatigue could certainly be down to adrenal struggling, and probably even more so trying to deal with recent virus. Don't worry about using CRP & ESR rather than full names we know what you mean.

But can I ask why you have been on 5mg for 12 months [have you tried tapering lower and and can’t, or other reason?]… and what do you mean by terrible pain? That doesn’t sound like ‘just’ adrenals.. is it your PMR or LVV or something different?

[Oddmanout in reply to DorsetLady]

I’m down to 5mg after months of tapering down at half mg per month over 12 months ago. I have had frequent flare ups and my blood inflammation marks rise. My Rheumatologist isn’t keen on me lowering below 5mg because of the flare ups. She said I may have to stick with 5mg. The pain I experience is quite severe across my shoulders and my neck and down my back after a short spells of physical activity. I am forced to sit down and rest for the pain to subside.

[PMRpro Ambassador in reply to Oddmanout]

Have they looked for a more mechanical cause of the pain - tight muscles and spasming for example? PMR and myofascial pain syndrome often go together but MPS tends to respond better to more targeted therapy than just oral steroids. I had horrendouns back pain even without any exertion but steroid injectionsand physio have made a massive difference, They started with physio but that only got me so far, the steroid injections were the real breakthrough.

[Oddmanout in reply to PMRpro]

I don't have muscle tightening or spasms. I had a course of hydrotherapy and physio for six weeks just after Christmas but haven't noticed any improvement. I think my chest and cough are weakening me far more than want to admit. Stiffnessfness, pain in shoulders, neck and back together with slight breathless and fatigue remain constant.

[DorsetLady PMRGCAuk volunteer in reply to Oddmanout]

As PMRpro has said more investigation on pains methinks ..

[PMRpro Ambassador]

Just one point - LVV is not large VEIN vasculitis but large VESSEL vasculitis - it may sound picky but GCA never affects veins, always arteries, and LVV affects the largest ones: the aorta and branches off it. It may affect smaller arteries too and then the symptoms may be more like PMR - but what symptoms resulted in their identifying LVV?

But pain - what sort and where?

When you had the cold - were you tested for Covid? Persistent cough and breathlessness on exertion that is new or unusual needs to be checked out thoroughly.

Never worry about abbreviations - if we don't know them and can't find them, we will ask!!

[Oddmanout in reply to PMRpro]

Thank you. I wasn't tested for Covid, and thank you also for LVV clarification

I had more blood tests today at Rheumatology so let's see what the results say. I will make a further appointment with the GP if things don't improve.