should I increase my Pred once again?

[Jackie2]

I’ve been on Prednisolone for GCA for almost 4 years, I’ve managed to get down to 5 mgs daily three times in recent times before a flare meant yet another increase yet again. This time I was down to 7mgs a day before I took a tumble 10 days ago and fell hard on to my bottom. I’ve been in a great deal of continuous pain and find paracetamol and cocodimol 8mgs is barely helping with the pain. Should I temporarily increase my dose of Prednisolone to help with inflammation if so what would you recommend? My GP does not have a good understanding of GCA and in the past has been unhelpful. Also I was diagnosed with osteoporosis in June last year believed to be steroid related. Thank you in advance 🙂

[SnazzyD]

Ouch! Has the pain been constant since the fall? Have you had the area x-rayed?

[Jackie2 in reply to SnazzyD]

hi SnazzyD yes the pain has been constant but it’s not my coccyx I think ‘my seat padding’ 😳 is badly bruised and inflamed 😂. aware of all the problems and huge delays in hospitals this past week or so I’ve not been for a X-ray always believing it will get better.

I’ll increase in Pred for 10 days and try to get a telephone appointment with my rheumatologist and keep you updated 😊

[SheffieldJane]

Have you had an X-Ray? It is apparently relatively easy to break your coccyx and your pain is unrelenting. Personally I would take an extra 5 mgs for a week to 10 days and return straight down to 7 mgs after that. My Rheumatologist lets me make these decisions, ensure that yours is on board. Do ensure that you have received a proper diagnosis though. Poor you, it sounds miserable. Don’t even think about tapering, I think your stage is the hardest.

[Jackie2 in reply to SheffieldJane]

thank you Sheffield Jane, no X-ray as my coccyx is pain free thankfully, the pain is deep in the cheeks of my bottom, 😳 feel it may be bruised muscles or tendons perhaps. I’ll do as you suggest and increase my Pred for 10 days and try to speak to my Rheumatologist if poss. You’re so right I’ll leave tapering until I’m leaping around once again. Huge thanks 😊

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your tumble - sounds very painful, so yes treat as a flare…..this link contains info (but as you’ve been there before you know the drill) -

healthunlocked.com/pmrgcauk...

- but if you keep flaring at same dose are you trying a very slow tapering regime and reducing by only 0.5mg a time? - Couple here. .which may help, but no matter what system you use if you go below the level you need, you go below it.. so maybe ease up for a while once you’ve got this flare under control -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

If it is an injury I'm not sure that more pred will necessarily help. If it were PMR you have the fall could have caused a flare but not sure if that applies with GCA.

[arvine]

Interested in your GCA symptons, not PMR necessarily, and how did you get diagnosed with GCA please,

[Jackie2 in reply to arvine]

hi Arvine I was diagnosed with GCA following a biopsy some 4 years ago. I don’t have PMR just GCA thankfully. symptoms are kept at bay with Prednisone however whenever I reduce to below 7 mgs I’m prone to a flare. This has happened 3 times now. First occasion I got down to 5 mgs but following a very stressful event had to increase and very slowly reduce again and two further flares following falls. Following the wonderful advice and support on this site I’m increasing Pred once again for 7-10 days knowing it’s temporary and I’ll be back to 7 mgs once again. Hope my info is of help Take care 😊

[arvine in reply to Jackie2]

Hi Jackie, what is involved in a biopsy, I read sometimes that,s hard to discover where the artery is inflamed thru biopsy, and ultrasound is a better choice for diagnosis, but obviously your GCA diagnosed thru that, what dose did your dr put you on at that time to get under control, and when you do taper to 7 do you get GCA symtons, and what would they be?

[Jackie2]

hi my biopsy was in hospital under local anaesthetic when a small piece of artery was removed and examined, consultant confirmed GCA. I was put on 50gms of Pred immediately. I experienced horrendous side effects for 3 -6 months before tapering slowly DSNS over the following year. As I explained I have managed to slowly reduce down to 5 mgs and 7 mgs of Pred during the past 4 years but have experienced 3 flares over past 3 years. Symptoms of flare are not quite as severe as initial symptoms at diagnosis, which were severe head pain, eye socket pain, jaw pain, tingling across head under eye and jaw line and of course huge fatigue. Apart from Druids of sick leave, I’ve managed for the most part to continue to work full time but have recently reduced my work to part time. I’m waiting ever so patiently for my GCA to burn itself out which I believe it will eventually. 🤞 hope this helps

[roggiejohn]

Hi Jackie. I feel yout pain and frustration. What I have learned, the hard way, is that after a fall (you wouldn't believe how many I've had!!) the increase in inflammation can only be dealt with effectively by increasing the steroids. Do you have access to your local rheumatology helpline? I found it most helpful when times were bad. They would be able to suggest the optimum increase and revise your tapering plan. Hope this helps. Take care.

[Jackie2 in reply to roggiejohn]

hi Roggiejohn thank you for your empathy and advice. I can see now how it makes sense to increase my steroids to combat increased inflammation (including pain) I will ring my Rheumatology helpline/department tomorrow and keep you posted. Take care too

[roggiejohn in reply to Jackie2]

Good to hear that, Jackie2. Onwards and upwards!!All the best.

[PMRpro Ambassador in reply to roggiejohn]

Yes - but it all depends on whether it is a flare of the autoimmune disorder of whether it is muscle injury. Extra pred is unlikely to help injured tissue.

[Jackie2 in reply to PMRpro]

thank you PMRpro I’ll try to speak to my rheumatologist tomorrow to clarify if I’m experiencing a flare due to pain and inflammation following my fall or if I require higher pain relief from my gp. I find the site so helpful thank you 😊

[PMRpro Ambassador in reply to Jackie2]

It really is next to impossible to tell - only trying more pred will show. But a lot of doctors wouldn't agree with patients doing that

[south_nutter]

Forgive me but I am very wary of these forums; what is true for one person is not often right for another. You should rather rely on the advice of the professionals; unclear whether you have the support of a good rheumatologist if not you must insist that your GP refers you to one urgently. The issue of osteoporosis raises the possibility of breakage in your fall that needs to be explored as a priority.

[DorsetLady PMRGCAuk volunteer in reply to south_nutter]

Not sure where you live, but I think Jackie2 lives in UK, so your comment - ‘you must insist that your GP refers you to one [Rheumatologist] urgently’ ..is a pipe dream I’m afraid.

[Jackie2 in reply to DorsetLady]

hi Dorset Lady I am in the Uk, a very beautiful part of North Wales 🥰 I have a good rheumatologist when I can get to see him but trying to get through to him or his team has proved difficult today. I’ll keep trying tomorrow 🥰

[DorsetLady PMRGCAuk volunteer in reply to Jackie2]

let’s hope you can get some answers….

[Jackie2 in reply to DorsetLady]

thank you Dorset Lady and all who have offered empathy, advice and support

Fingers crossed I can get a response from my rheumatologist tomorrow. Who would have thought a short fall onto one’s rump would be so bloomin painful 😞😊

[DorsetLady PMRGCAuk volunteer in reply to Jackie2]

A right pain in the b%#…..😳

[Jackie2]

definitely 😂😂😂 whilst retaining a good sense of humour 😂😊

[DorsetLady PMRGCAuk volunteer in reply to Jackie2]

Good sense of humour is an absolute must… got me through a lot of things, best not mention a few scrapes as well ..🤦🏻‍♀️