Hi All, having had the most wonderful 'first time' cruise on the Azamara Quest (highly recommend) in August, have returned to Earth with a bit of a bang!
Diagnosed June and on 15mgs initial dose had euphoria outcome from wonder drug pred! Managed about ten days on 12.5mgs before cruise but went to 15mgs during cruise. Have had difficulty going back to 12.5mgs since. On 15mgs less spasms, aches and pains, stiffness but dripping hot flushes, less fatigue.
Am currently on sixth day again at 12.5mgs and lots of muscle spasms and buttocks aches have returned, plus some stiffness but so far haven't had the palpitations I had at 12.5mgs previously. Any ideas about what might cause the palpitations?
The fatigue kicked in at both 15mgs and 20mgs. I am useless until about 2.00pm and by 4pm am knackered! This is really affecting morale at present. My body clock is all over the place sometimes I am going to bed at 5.00pm in the morning!!! Am thinking of taking pred night time rather than in the morning since I am currently at my best from about 7.00pm - 3.00am? Any thoughts? Last bloods (Sept) normal range? - ESR 16 CRP 3.9. On diagnosis bloods normal initially, despite almost no mobility, but shot up to ESR 80 CRP 18 in June, so I may be one whose blood results kick in a bit later?
I am also dismayed about the deterioration with my eyes. Test in June everything fine and eyes healthy. Recent re - test, due to unclear focus and significant blurring of nighttime vision when driving, shows early signs of cataracts and recording 16 on Glucoma test, which optician has said is likely to be steroid induced, as well as sight in both eyes deteriorating by 1.0pt in both eyes. How does this happen in three months!!!
A recent DX scan shows Osteo on one vertebrae in spine, but I have refused Alendronic acid. Stand in Rhemy said there are alternatives that we could discuss on next appointment - any recommendations? I refused as they didn't have my previous results of two DX scans for comparison to measure rate of deterioration, both my mother and sister did not get on with Alendronic Acid and I have seen posts on this site that were not favourable. Any suggestions for alternatives that have worked for you?
Undiagnosed tingling in feet and hands and now some numbness in pelvic area has resulted in doc ordering MRI scan. Since this is early in the morning I am assuming I it will be better if I take meds late at night to make time lying down for scan more comfortable?
Given the above Doc is wondering whether I should take different meds to pred. He has written down a couple of options for me to discuss with Rheumy on next appointment. Excuse the spelling but his handwriting is difficult to read - Methotrexole or Azethioprine (I think!!!) Anyone any experience of these?
On the plus side I started my borough children's choir ( some members will be aware) and, though physically taxing at present, this is my saving grace! Am loving it and so are the children. Have had to curb the rest of work commitments at present. Hopefully things will even out a bit soon.
All advice re any of the above welcome. Many thanks.
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Marilyn1959
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Lovely to hear you had a great time on your cruise, but now back to reality - never mind.
If you are having problems with taper from 15mg to 12.5mg then join the club - many do! Try going back to 15mg for a week or so and get rid of the aches and pains, don’t let them get any worse. Then try reducing by 1mg or 1.5mg as the 2.5mg is obviously too big for you. If you haven’t already got them, get your GP to prescribe 1mg tablets.
Palpitations are likely to be side effect of Pred, along with the Pred induced cataracts and raised eye pressures. You are unfortunate in that both have happened so early, but both can be addressed.
The fatigue can be caused by both the Pred and the PMR, so it’s learning to manage it I’m afraid.
If you are feeling so shattered then either you are not taking enough Pred, or your body is not getting the full benefit of your dose. Splitting the dose may help or altering it may - you have to try it and see really.
The blood markers invariably follow behind the symptoms, which is why we always rattle on about taking notice of them (symptoms) primarily.
Haven’t experience of steroid sparing drugs you refer to, but sure others will come along idc, but most on here think you’re just adding another drug into the mix unnecessarily.
I know you enjoy your choral work, but as we said before the workload is probably not helping your PMR, but that’s a decision that you have to make. If the enjoyment you get from it outweighs the affect on your PMR then that’s obviously your choice.
You might want to try a slow tapering plan, many don’t need it until they get to lower doses, but anything’s worth a try if you are having problems.
Thanks for the reassurance DL especially about 'joining the club') and option advice. I was concerned about having tapering problems so early on as others seem to be able to taper more quickly from higher level starting doses than me. I know, I know everyone is an individual........... But reassuring that, though an individual, I am not unique in respect of difficulties incurred when pred tapering.
I am back to taking 15mgs, though not making a significant difference at present - perhaps early days???? I will certainly look at 1mg reduction as you suggest once things stabilise a bit. Patience is a virtue I have always been lacking! My very first boss (Headteacher) always said I wanted things done yesterday!!!! Can you therefore give a best guess indication of how long one might expect any change I.e. Level of pred, changes in time taking doses etc to impact. The last time I changed dosage gave it eight days and regretted giving it so long. Is this me being impatient again?
Just a thought, would coated / uncoated pred make a difference to how the body absorbs meds? When I take 15mgs they are all uncoated (3x5mgs). When I take 12.5mgs it is a mixture (1x 2.5mgs coated, 2x5mgs uncoated)??????
"would coated / uncoated pred make a difference to how the body absorbs meds?"
Yes, uncoated pred is absorbed all at the same time from the stomach and within about an hour so the blood level spikes high quickly and then falls off. The effect is seen within a couple of hours usually (there are exceptions).
With coated pred it has a coating that prevents the tablet being broken down in the stomach as it is resistant to the acid. That means the unbroken tablets passes further down the gut before breaking down and being absorbed. That means it takes more like 4 to 5 hours, sometimes longer, and the peak level achieved in the blood is lower - a longer slower rise in the level, with a more rounded shape if you draw a graph. The fall off from the peak dose is much the same as for uncoated. So mixing coated and uncoated you will almost certainly have a lower peak dose - and it may not be as effective at hammering the inflammation on the head. On the other hand - the effect MAY be present a bit longer. It depends on the person.
I wish I knew how to draw graphs on here!
You would probably be better getting a pill cutter and cutting a 5mg uncoated pill to get your 2.5mg contribution.
And yes - I think you are expecting too much. All ways round.
If the increased dose of Pred is sufficient, then it should only take 2 or 3 days to notice a difference. Can you remember how long it took when you were first diagnosed, did you get a miraculous change or did it take a few days.
I notice that PMRpro suggests going up to 20mg, and although I would guess you don’t want to, you may have to. If you do that, then usually after a few days/week most people find they can come back down fairly quickly and easily. Can’t voucher for that, fortunately I never had a flare as such.
The uncoated tablets get into your system more quickly as they start to be absorbed earlier in the digestive tract, that’s why you may have to take a PPI - omeprazole, lansoprazole or the like. Takes between 1-2 hours. The uncoated ones take longer 3-4 hours, maybe longer, because they get further through the system before being absorbed. I only ever took the uncoated ones, so can’t advise what’s best. Horses for courses I think.
Osteo? -penia or -porosis? What were the t-scores for your spine? AA for a single low density vertebra? Without a figure?
Palpitations could be pred. Or they could be due to atrial fibrillation which the autoimmune part of PMR can cause by damamging the electric cells in the heart that cause the contractions. That was the case for me - I had them long before pred.
I would definitely try taking the pred before bed - someone else had a similar problem and found taking the pred at night pretty much solved the not sleeping overnight.
If he is suggesting methotrexate (mtx) or azathioprine (aza) I wonder if he thinks it isn't PMR at all - they are supposedly used as steroid sparers in PMR but there is no evidence aza works as such at all and it is mixed for mtx. Either way - they don't REPLACE pred in PMR.
If it is PMR my suspicion would be that you need to go back to 20mgs as it sounds as if 15 didn't clear out all the existing inflammation before you reduced. And I'd also reduce in smaller steps.
The eye pressures are usually monitored up to about 20/21 - then drops are used, just as if it were glaucoma.
If you are so shattered - maybe you are simply doing too much? PACING!!!!!!!!!
Just received letter from stand in Rheumy I saw on last appointment. Very inaccurate letter to say the least but hey ho keeps us on our toes!
I apparently have a T SCORE -2.5. I don't know what this means in the great scheme of things perhaps you can enlighten me? Because 'quote' I politely declined AA, a leaflet has been enclosed with the letter about Prolio (Demosumab) an injection every six months? Any knowledge / experience of this? It may be out of the question since, of two side effects, listed it can cause Osteoncrosis of the jaw which is rare, however I have a crumbling jaw ( have no idea what the medical term is) already and had to have it filed a few years back! Not had problems since though.
I have increased pred back to 15mgs again, which though has slightly improved level of aches and pains a bit is not having impact as it once did at this level. Will try taking night time as suggested. It has been mentioned before by PMRpro and others that my starting dose may have been too low, so of the night time meds routine doesn't work may try 17.5 mgs and see where this takes me. Currently I am not having a repeat of the palpitations at 15mgs. Fingers crossed.
Thanks for clarifying about steroid sparers. I am guessing these have been suggested since I am struggling with reducing pred? Despite better bloods though I know that inflammation is not under control, not least because when it is not under control my knees, thighs and neck become swollen. When it is under control they appear normal. The difference can be a matter of 2.5mgs increase / decrease in pred. Since there isn't a consensus about sparers think I will just try to resist the Rheumys drive to reduce until symptoms stabilised again at satisfactory level.
Re doing too much in relation to fatigue, I understand the reasoning and believe me I have not been doing anything apart from my one hour of conducting the choir - (my form of exercising arms). Simply have not had the energy. I suspect this is a combination of irregular sleep patterns and lower dosage of pred.
Re Opthalmologist - the optician said that I was at top of scale of normal at 16? Once you go over 16 then they refer on. However think I might pursue appointment (suggested by Jane) since changes have been paid recently.
Thank you all for your invaluable advice and support.
Your t-score puts you at the osteoporosis level, you have very low bone density. Denosumab is probably the better alternative than AA in this case. But (I assume you are in the UK? I can never remeber) I'd contact the National Osteoporosis Society
Helpline and get it all talked through and find out what your options are with that history.
You do need to discuss it with an osteoporosis expert to see if any of the drugs used are better for your clinical history than others. I personally wouldn't accept recommendations from a rheumatologist or GP under the circumstances. I do know two or three people with complex problems who have done very well on denosumab.
Where are you? With this sort of complex problem I'd say you need a REAL expert rheumy, maybe there is one in easy reach. Just checked - I would be asking for a referral to Southend.
Thanks PMRpro. Had I known about Dr Gapta? In Southend at the time I would have asked for a referral to him. I will seek an appointment with specialist in Osteo as you suggest and also contact the Society for some advice meanwhil, especially since my Rgeumy does not have records from previous hospital so cannot be expected to join the dots!
Since posting I have been in touch with my previous hospital who have given me previous DX scans results for comparison. In Sept 2013 T scores for lumbar were -1.9, hip - 0.4 and neck -0.1. In Nov 2015 lumbar remained the same at -1.9, hip - 0.1 (slight deterioration). I only have the overall score for the most recent one which is -2.5 according to letter received so coming from a fairly static baseline for four years there does seem to be a substantial difference sometime during the past two years. Therefore My best guess is the change has probably been induced by pred in the last four months. So I do need to crack on with decision re meds. Therefore I will be following your advice above with a sense of urgency.
The other factor, did you have the latest scan on the same machine? That could mean a difference, and there are other factors which can lead to inaccuracy. I've had my back straightened up so much by my physiotherapist that the technician had to move me into what was a now very uncomfortable position in order to match the image taken previously. She did do a super job, I have copies of the images so I'm confident the comparison was accurate, but in a different facility they may not have got you in the same position, and the reading will be different, plus I understand that even in this day and age readings vary between machines. Which does, of course, raise the question, just how accurate a measure is a DXA scan anyway, maybe all we can hope for is a bit of rough guidance!
Hi Heron, no it wasn't the same machine or same hospital and since you mention it, the machine and process seemed quite different. I guess it's like a making sure you are weighed on the same scales ( I always prefer the scales that record the lower weight!).
Whilst I take your observation on board, with my family history and indeed my own, I think I need to take this all a bit more seriously and thinking and acting preventatively (if that is even a word and can be done!)
So it's possible the difference isn't quite as great. Your earlier reading may have been very slightly optimistic, and the more recent one a bit more pessimistic, but another, possibly more accurate, reading might have put you more to the middle of where you are. Yes, you must take the change seriously but I suspect if you'd been able to have the latest one at the same facility the change wouldn't have been so great. All the best!
I am glad you have the happy thing of the borough choir in your life. What a gift.
My more experienced friends have given you good advice. Can I just suggest that you look at your old posts and see the patterns that emerge?
Also if you haven't already done so have a thorough eye examination with an opthalmologist. You have been complaining of eye trouble since the start. We all have to be alert for signs of GCA, don't slip through the net being such a busy bee 🐝.
I suffered with palpitations at the higher doses of pred at the start of my journey with PMR and certainly found splitting the dose and taking up to half of it at bedtime reduced the sleeplessness.
I used to love singing in a choir but now I barely do any evening activities. I still manage my active days with my pony and dogs but after 6pm I have I just chill.
Is your voice still good Marylin. My recent stint as a singing Granny demonstrated that a sea change had happened to my voice and not for the better. I used to be in the Nightingales at school ( top choir).
Yes my voice is still good. Recent audition with conductor from Royal Opera House resulted in comment 'you have a lovely rich quality. However years of smoking has resulted in a more limited voice range, so am now alto rather than soprano. However I enjoy a singing Granny probably more than I do listening to a professional because Granny sings spontaneously with fun and enjoyment! I also love to hear Gospel singing for the same reason though am not religious.
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