I know that we all have trouble reducing Pred BUT it has taken me 4 years to go from 80mg to 10mg and have been trying since January to go down to 9mg, It is so hard. Gave up the snail pace drop this week and back on to 10mg since Sunday. Problem is I'm not sure this is enough and can't get an appointment with my named GP for 3 weeks [the other GP won't go against Rheumy who said 10mg back in Oct.] I have asked to be referred to another Rheumy but no reply from hospital yet - 3 weeks ago. I am so tired and have been very depressed though coming out of that slowly. What do I do? I'm okay first thing but within a couple of hours my hips and shoulders start. I'm getting fed up of resting but more am fed up of not being able to do simple tasks. Sorry I have PMR and GCA. I know I'm a moaner and I try not to be, really getting to me at moment. Thanks for being there everyone I do need to know you are there. LOve to you all Cath
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Maybe 10mg is what you need at the moment, or maybe you’re not getting full benefit of dose - whatever think you need to speak to Rheumy - or his office and explain the problems you’re having.
It’s never easy, but it should be easier than you are going through.
Thank you I have tried to go really slowly and will go for extra slow .5mg reductions in future. I can't contact my Rheumy as he is the one who believes that Pred only lasts 18 months to 2 years and only seems to know that GCA causes severe headaches - even though I never presented with headaches and told him so repeatedly he only ever asked about them, he says the pain in my neck is possibly due to muscular curvature [ although the physio he sent me to thinks it's OA and spondulytis] I admit I'm scared about GCA flair as I've lost enough of my sight despite the Pred. I'll stick to 10mg for a while and see if it helps. Thanks again, xxx
I've been doing that for a while but thought should have a good go at going down again. Being good patient doesn't seem to work for me anyway I guess I'll just have to be me he he xxx
If you feel better at 10mg - stay there. You aren't a moaner - you are looking at what you have been told to do in theory and finding that, in practice, it doesn't work. When your body says no repeatedly - it means it.
Thank you PMRPro I'm going to take your advice for now, it all gets too much sometimes doesn't it? Got through the cancer and major ops easier than this. Oh well onward and hopefully upward. Thanks again xxx
Hi was diagnosed GCA / PMR on the Saturday, given 80mg Pred for 4 days then 60mg. On the Friday I woke up with sight loss in right eye ( only some peripheral sight left ) and some damage to left eye. So remain wary. Xxx Live in North Wales
I hope you can stay at 10mg a while. Look how far you have come. I only came down from 15mg to 10mg in a year (up and downing) but once at 10mg it was 0.5mg every drop thereafter. As I said on another thread, if you take it that 7mg is just replacing what you can't make at the moment then you are at 3mg so not a lot to stay on until you feel more stable.
Like PMRCanada I also had three attempts to get below 10mg. The third time back at 10 I stayed there for six weeks. Have been on 9.5mg for over three weeks now so maybe third time lucky. You’ve come a long way so far, so hang in there. You can do it! 🌻
I too had a challenging time reducing from 10mg to 9.5mg, took 3 tries but finally managed it. Going down to 9mg was easier, and 8.5mg was easier again (only took about 10 days of tapering??). Seems to make no sense at times but I suspect PMR ebbs and flows.
As mentioned, you may need 10mg, simple (and frustrating) as that. Good luck with trying a .5mg drop.
What are your bloods [CRP, ESR]. For GCA with vision loss, its critical to monitor the bloods,
especially when tapering. I go for my monthly test tomorrow [CRP, ESR, glucose]. My rheumy set up open blood tests for 12 months so i can go in as often as needed, usually monthly. If CRP or ESR start to go up above my normal value i stop the taper or increase pred. No point in taking a chance on eyesight. I was diagnosed with GCA Nov 2017 losing upper vision in left eye; put on 80mg pred. Now struggling to taper from 6.5 to 6.0mg.
Going below 10mg has been a struggle and flared 3 times. Now going slow in .5mg increments. Once i get to 5mg i anticipate staying a while, tho my rheumy wants me to go to 0. I had an MRA of the chest for aortitis in dec 2017 indicating no problem yet.
[my sister has GCA with vision loss, PMR, aortitis requiring open heart surgery.]
re: ESR=18, CRP=10. Those inflamation markers are high, especially the CRP indicating the need to increase pred. see: ncbi.nlm.nih.gov/pmc/articl...
"Utility of Erythrocyte Sedimentation Rate and C-Reactive Protein for the Diagnosis of Giant Cell Arteritis..............ESR was measured by Westergren method. Based on Mayo Clinic clinical laboratory reporting, an ESR value of ≤22 mm/hour in men or ≤29 mm/hour in women was considered normal regardless of age. A normal CRP was defined as a value of ≤8 mg/L in all patients regardless of age."
What is important is your present results compared to previous best results.
I just got back my blood results from yesterday. ESR=6 mm/hr; CRPhs=0.8 mg/L; glucose=90 mg/dL.
gifford7, GCA with vision loss 11-17 80mg, 6mg pred
An ESR of 18 is not necessarily high - though it may be be for a particular person. The normal range for ESR found across a population of 10.000 healthy persons is up to 20, according to some authorities up to 30 in older women. Context is all!!!
There is also a 10x variation in CRP levels between laboratories due to the units used - up to 1, up to 10. The range should always be quoted in brackets together with the result - to give context.
Hi. I'm sorry to hear you are having problems reducing. It really is maddening. I got down to 2mg then had an awful flare up (convinced there was a virus going round at that time). I'm now back up to 10mg!. Am starting to reduce again now, but I reduce by half a tablet at a time instead of one. Not such a shock to you're body.
I agree - Jan 2015 started the preds and I know I now have OA in my feet, possibly in my neck and hands. We'll all keep going until we beat this thing xxx
I've been stuck on 7mg since last November. Hubby had a seizure and on the way to hospital in the ambulance I started getting chest pain. They checked me out at the hospital and I had had a heart attack, Tacotsubo Cardiomyopathy, was in for a week, now on lots more pills for heart. Keep trying to get down to 6.5 but after a week get stiffness in shoulders and back of neck. Decided to stay on 7 until after holiday to Ireland at Easter.
Seems to be OK now, I was told to rest for a few months so I have a cleaner that comes in every 2 weeks to do the floors. Waiting for a follow up appt with the Cardiac Clinic!
could the pain, since it comes on so quickly after reduction be the prednisone withdrawal and not the PMR ? I know the symptoms mimic each other. I have shoulder pain when I reduce that I try tylenol for...and if it helps..I carry on. If it is still there or worse after the 5th day I assume it is PMR and not prednisone withdrawal and go up for a day and then try again for a couple days. and the if I can't stay down go up and start the DSNS again. Good luck. Also maybe Spring will help us all!!! (although we are expecting a foot of snow tonight! haha.. but that's fun. ride my bike 2 miles one day and snow shoe 2 blocks the next!.
Hi there wish it was just the reduction. Have tried since January and with only minor and very slow reductions. Not working. I'll take a break and stay on 10mg for now. Thank you xxx
I remember phoning my sister in tears during the first attempt from 15mg to 8mg. The latter drops were so painful and I used to tell sis I couldn't do it...I did and just got worse. Inflammatory markers were higher that at DX by the time I got to 8mg. I have dropped in and out of the threads so forgive me if you have explained already. Have you had any blood tests recently to check??
I always find reductions below 10mg affect me more than when I was in higher doses. Take it slow and maybe once you have gone down a milligram you stay at that dose until you feel a bit better. I had to stay at 5 mg for 6 months and it has taken me 10 weeks to reduce to 4mg but for the first time in 3 attempts I feel OK.
You are not a moaner. You are just sharing your painful truth. I've had much the same experience. Came down from 50 to 10 like a rocket but what I eventually realised was that I was having greater emotional fall out than the pain. Some very dark days indeed. Bursting into tears about just everything and I am not a cryer. My family recognised it was not me at all. Looking back I think I was physichotic at times. I now realise that my withdrawal path was mainly a chemical embalance leading to depression. I worked with a music specialist GP. She suggested going on an anti depressant to help me reduce. I am now trying that and fingers crossed it's going well. I feel great. Also beendoing a Keto diet so the weight is started to come off. Ok so since I stopped eating processed sugar , within 2 weeks I no longer have the persistent back pain. Noticed this disappeared after I stopped eating lots of sugar goodies at xmas and new year. Like I said in my post I didn't know the person I was last year. You need advice and you need it now. Is there anyone who can advocate on your behalf to start shaking the tree a bit. If you are in the UK you are entitled to a care plan. Do what I did. Health service where I live refused to give me a second opinion and I contacted my MP. I got that decision overturned and an appointment with a specialist hospital. It confirmed what I already knew, my symptoms were much wider than just PMR & GCA. Shout, shout loud...sleep later. Get people to help you stand your ground. You cannot do this alone as I painfully realised. Wishing you well.
On wow never had a care plan. Have been on anti depressants long term due to previous work issues so am lucky to have 2 close friends from my early treatment days and they are there for me in the dark days. I will take on board what you say. It is 3 weeks since the hospital would have received my request, I'll give it another week then go stronger. Thank you for your support really appreciated. Xxx
"I found that the most reliable and sensitive parameters to regulate and taper down steroid therapy were the levels of ESR and CRP, and NOT systemic symptoms. All patients were maintained at the high dose of Prednisone till both the ESR and CRP had stabilized at low levels (that usually took 2-3 weeks - CRP came down much faster than ESR - see figures 3 and 4 ); after that very gradual tapering of Prednisone was started, guided by the ESR and CRP levels only.
The median time to reach the lowest maintenance dose of Prednisone at which the ESR and CRP stayed low and stable was 48.7 months, and the median lowest Prednisone maintenance dose achieved was 7 mg/day (interquartile range of 1 to 16 mg/day)..........
I found that the vast majority of GCA patients need a small dose of steroid therapy for years, if not for the rest of their life."
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