I've now been on 4mg daily for about 8 weeks, sticking it out in the hope that my adrenal system will kick in and restore its natural functioning given enough time.
On the plus side, I have found that the episodes of flushing, nausea and shaking have reduced. On the minus side, my energy levels simply have not picked up, so that on a good day the most I can manage is a 5 minute drive to the local shop and back. Othersie, I've been watching the Tour de France from my armchair.
Last week, I had a myocardial perfusion scan, which seems to have set me further back. Since having it, my chest feels tighter and my breathing is more laboured. Coincidence? My joints are feeling more achy too, so I fear that this may all suggest that I need to increase my steroids again....
The picture is one my bike sent me from its holiday without me this year. x
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whisperit
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I am debating with myself whether I should double my preds for a couple of days to see if that reverses the chest tightness. I went down the surgery this morning, in fact, to check I didn't have a chest infection. The nurse was concerned enough at my dyspnoea and tachycardia to send me into a GP, but my regular guy is on holiday, so I just got confirmation that there's no infection there and a sort of "don't ask me, I don't know what you are usually like" response to anything beyond that.
Like PMR my first thought was to increase your prednisolone. I know you have been trying so hard to get it down but a week of an increased dose won't put you back to far. That perfusion scan was a big stress on your body and I wonder if you should have been told to increase for it. It isn't going to hurt putting the dose up for a short while.
Thanks rolybear. I'm especially keen to be OK just now as I have to spend a night away from home this weekend to attend my daughter's graduation. I'm determined to be there, but it'll be only the third night I have spent away from home in over 2 years (excluding hospital stays) - super stressful! x
It's interesting, I was told by my dr to increase for holidays etc. Works brilliantly because I was always starting to flare. I tried decreasing prednisolone dose after increasing for surgery. I felt awful,increased yesterday and by the afternoon felt a bit better. Today some of the joint pain is reduced,not a miracle cure but helps
If it's just been a week I taper it down a mg a week. This would be too quick for me if I had been on it longer. I go for iloprost every 4 weeks and I double it for 3 days, on that occasion I just drop it back to the original dose on day 4 with no ill effects.
Really hope you can find something to help you get to your daughters graduation and enjoy it. You must be very proud of her.
Of course my advice is not replacing that of a dr, just sharing what I've been told to do and through trial and error what's worked. Always best to check with your medical team
Thank you. Don't worry - as well as seeing my GP, I also just spoken to my rheumy nurse to check I'm not going too far off piste. (once again, I incidentally find that they hadn't realised I was due for my 6 monthly review next week.... )
My dose varies a lot. I have strict instructions not to go under 5 mg but to try and keep it at 10mg or under. I'm hard headed and a few months ago I ignored various signs and got it down to 2 mg. Rather unimpressed dr and just about said it was my own fault for flaring,he asked me twice to repeat the dosage and sat shaking his head.. I kind of agreed,I went back to 5 mg and seemed to settle a bit. I range between 5 mg and 10. Reason for it going up and down mainly is to increase for the iloprost infusions every 4 weeks. After my recent op and feeling horrible I'm currently taking 10mg and starting to feel the benefit of a bit extra. I wasn't able to manage on these lower doses before mycophenolate and I still had other symptoms.
I'm quite tuned into my body and seem to follow a bit of a pattern with flaring. I start off with temperatures at night and joint pain,then morning/ evening stiffness and pain. My bloods always go a bit wonky with my already low lymphocytes dropping further. I quickly get a malar rash, have a weird facial numbness and left sided weakness(told probably a migraine type thing) and if I ignore it long enough hot swollen joints. When I have left it too long I can't get back down and end up for months on 10mg and again try to reduce and have to go back up, also at times have required up to 40mg which is not an experience I would like to repeat...I don't do well on doses above 15
Thanks! Helps me a lot. Am also on therapeutic daily dose of 5mg pred, but allowed up to 10mg so long as taper slowly back down to 5mg fairly promptly. I too do increase to 10mg when i anticipate strains likely to cause flares (vvv helpful tip re infusions: i hadn't thought of increasing for them, but makes perfect sense...for trips & visitors i always do an increase). With my history, I have little doubt i'd be highly likely to have pred-related psychotic episodes on doses higher than 10mg...
I think you're on a higher daily myco dose than i am (mine is 1000mg). I forget whether you're on daily hydroxy (me: 400mg).
I'm on the same dose of mycophenolate as you but only on 200mg of hydroxychloroquine due to my low weight. Gives me some hope that my dr knows what he is doing if my meds are the same as yours since you attend a centre of excellence!
Am so glad you're here RB: knowing the relative similarities in our conditions + in our medics' approach to our treatment plans & their effectiveness gives me a lot more confidence generally!
Not a clue about pred because I'm not allowed it. I do hope you make your daughter's graduation, though. If it helps, the tiniest bit, two days before I went to London for my son's "do" it seemed I wouldn't be able to make it. I did. x
Hi Mike, hang in there with your pred taper -glad you reported this flare or whatever to a GP and your rheumy nurse. Hope you get your review as it sounds like it's well needed. Aww to your bike on its holls without you😥 It's clearly missing you though and 🤞🏽🤞🏽🤞🏽 You'll be reunited one fine day. X
in reply to
PS daughter's grad a priority worth increasing pred for if necessary I feel. I did this for my son's I admit - then got off it fully a month later.
Thanks Twitchytoes, it's high on a mountain bike trail in the Dumfries and Galloway Forest Park. A place I (we!) visited a few years ago. I loved those big open spaces x
If it were me and I have been in that position a few weeks ago. I would take extra for just a few days then you can get it down quickly without having to taper of. Good luck thinking of you xx
Well done for getting to 4 mg steroids, such an achievement but sorry your paying a price!. Interesting the funny episodes have lessened. Have you had the results of your chest scan yet?. Bet your chest watching wondering if steroids should go up, not easy juggle!. I've found my fatigue has got worse the lower the steroids have gone. I'm now on 7.5mg and wonder when to do 7mg. It's hard as we help one thing and hinder something else with these illnesses so are still curtailed which is hard to live with. Fingers crossed for your results and Harry hedgehog sends his love to hedgewig. X
Exactly right, misty. I had a strange burst of energy when I dropped from 7 to 6 - for about 10 days I was as bouncy as a normal person. When that petered out, I thought I'd try another reduction to see if I could recapture the effect. No such luck....and now I am fretting that my lung inflammation has come back. Scan results should come back next week. *sigh*
I simply cannot remember signing up for any of this....musta been drunk at the time...
Trouble is effects of previous dose can still be in our bodies a while and it catches us out. If only that energy had lasted!. Life can be one long fret for us if we let it with these illnesses I too don't remember signing up for this and I've been doing it for 30 years now.!. Fingers tightly crossed for your scan results and I do hope you make your daughters graduation. Really special day not to miss!.
Joint pain has eased thanks. I do stay on new steroid dose for a long time and go for next reduction when well. I'm wondering whether to do 7 mg or not at the mo!. Decisions, decisions!. Keep us posted. x
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Help and support needed! Struggling.
