Update on recent flare and house move
Posted , 12 users are following.
Hi everyone.
So glad to be back online after 7 weeks..but feels like a lifetime away! Flare seems under control and pred down from a high of 25mg to 16mg (first week at lower dose). However, still in some discomfort over shoulders and down arms but bearable. Have good days and bad depending on weather. Very cold and damp here in Oxfordshire at present! Probably goes for much of Britain lol.
Currently reducing 1mg per week although new gp wanted 2mg reduction and to be at 12mg by now. I said that the pain needs to settle before any further reduction should be attempted. Hence the compromise. I still feel that this is going too fast and I need time for pain to settle before reducing further. Am I being reasonable or just a wooss? By the way I have only just printed off the link to the Bristol programme for pmr, but have yet to show him suggested reduction plan advised due to internet problems. I am not due to see gp again until Mch 9th.
1 like, 52 replies
tina-uk_cwall kay56703
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kay56703 tina-uk_cwall
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Kay
tina-uk_cwall kay56703
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i went and played tennis on Friday for the first time since PMR symptoms, (sep2013).i could barely run and I had no power and I couldn't serve but I just loved it. I suffered for the following 2 days but I took things very easy and I'm sort of feeling back to my normal PMR self! I also am doing plenty of walking and exercise at home and as you say I do feel very old doing all these exercises on half power (I'm only 53) but I realise this whole recovery process will not happen over night and any little exercise is better than no exercise. All the best, christina
liz23617 kay56703
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EileenH liz23617
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It's all cheaper than a divorce.
tina-uk_cwall liz23617
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EileenH tina-uk_cwall
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Fibromyalgia doesn't respond to pred, PMR does. And Christina is absolutely right, if you are really unlucky you can have both. One at a time is bad enough - having both is just greedy!!!!
michele96336 EileenH
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Mo
tina-uk_cwall michele96336
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the fact that you are experiencing a return of PMR symptoms tells me that not all the inflamation is yet under control nor is it being kept under control. So instead of thinking about reducing a dose perhaps you should be thinking about upping the dose. Then when all the PMR symptoms are gone reduce further.
also you really want to be staying on each dose for at least 4-6 weeks so that the dose can really do its work. Currently you are reducing so quickly that it will now be hard to tell which dose was the correct dose for that given level of inflamation.
i say up your dose and stay on it for a good 4-6 weeks, then only reduce if all the PMR symptoms are clear. Then reduce by a small reduction and stay on each reduction for 4-6 weeks.
Cocodymol won't really help with the pain as it is not an anti inflammatory and also if you have each dose correct you should not really need additional relief from pain unless of course we are talking about relief from pain derived from another pain source.
regards, christina
EileenH michele96336
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A 40mg dose is the starting dose for GCA rather than PMR and if your doctor thought it is GCA you need to stick at higher doses (above 20mg) for 6 months at least.
If he thought you have PMR why did he start you at 40mg? That is much higher than what is recommended. PMR is alone in responding so well to a lower dose - 15-20mg maximum. Other things will improve if you use high dose pred but will return as you lower the dose to the realms of PMR dosing.
It is safe to take cocodamol for a few days - but that isn't the answer. Apart from the fact it isn't anti-inflammatory it isn't going to do much for the real causes of PMR/GCA. But without knowing a lot more about dose/times/original diagnosis none of us can make any real suggestions.
michele96336
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EileenH michele96336
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IF it is steroid withdrawal pain then it should improve after a couple of weeks - but it sounds as if your rheumy hasn't left you any room to maneouvre. But I do wonder if he thinks it isn't PMR - because if it is PMR then the symptoms should be OK at 23mg and they aren't. In your place I would call the rheumy's secretary and ask if the appointment could be brought forward, explaining your pain problem, so you can discuss things with him.
A few ladies have had similar problems because the diagnosis of PMR wasn't the right one - but before they can consider anything else the rheumy has to get the patient off pred, or at least to a much lower dose. And that, I'm afraid, often mean a few months of a lot of pain and discomfort. Does co-codamol help the pain you have? How much pain do you have? What sort of pain and where?
I do wish doctors who aren't sure would google polymyalgia rheumatica to find the best treatment. If he'd had you on 20mg and it didn't work the rheumy (and you) might have had fewer problems now.
michele96336 EileenH
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EileenH michele96336
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I think you really need to discuss it properly with an expert - and I do hope he will explain what he's thinking to you. The pain and disability is very unpleasant - but if you feel your doctor has a plan at the end of it then it is much easier to bear for a few months.
Good luck - and do come and tell us what happens.
michele96336 EileenH
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kay56703 liz23617
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I am afraid that I can't offer any words of wisdom regarding moving house. Although I enlisted the help of as many available friends to help me pack as possible! It was my first house move techinically, as the house in question was the old family home. This has caused a problem with one of my brothers who no longer talks to me. I have been told that it could be a form of jealousy, which fits, as he is the youngest and most spoilt of the family. However, my stress overload was primariliy caused by an inept solicitor. I won't elaborate as I am currently going through a dispute with them, but good friends are invaluable to turn to in times of crisis or just even if you need a little support/advice. Other than that I still suffered big time. So I am the last person to ask for advice. Lol Just try not to control things too much. You can't possibly succeed so accept it. Best wishes with your move. Kay
kay56703 tina-uk_cwall
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tina-uk_cwall kay56703
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EileenH kay56703
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michele96336 EileenH
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tina-uk_cwall michele96336
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michele96336 tina-uk_cwall
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tina-uk_cwall michele96336
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liz23617 tina-uk_cwall
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tina-uk_cwall liz23617
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please look up on line ibuprofen and it will clearly say that it should not be taken with preds. Likewise when you look up preds online the info will tell you that you should not take ibuprofen alongside preds. You should not even be using ibuprofen gel, because that is absorbed into the body.
you say that you take both, why? If you are taking a large enough dose of prednisolone to cover the current inflamation then you should not need additional anti inflammatory drugs. And if you have additional medical conditions that require pain control, if they are also conditions that cause pain because of inflamation, then again the prednisolone should also be keeping that in check, hence, it's only when we begin to taper that sometimes other conditions are revealed because upon reduction the dose of pred is unable to control inflamation caused by a condition that requires a higher dose of preds. Also your Dr should know that both preds and ibuprofen should not be taken together.
I am afraid that I am no expert when it comes to blood tests but I think a CRP test is performed when I have a test. But also remember our blood tests should always be good whilst we are on preds. Because the preds control the inflamation so effectively our test should reveal no inflamation and so should be normal. Also PMR does not appear in a blood test, it is only inflamation that shows up in a test and that inflamation could be any inflamation. It is the sudden improvement of PMR symptoms when we take our first couple of pred medication that indicates to a Dr that the inflamation that appeared in the test was due to PMR. Any experts out there please correct me if any of this is wrong. All the best Liz, regards christina
liz23617 tina-uk_cwall
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tina-uk_cwall liz23617
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the preds tapering regime that you are under is also a very quick one if you are also now on 5mgs. I am wondering if your GP put you on this course as a one off course, like a friend of mine has when her RA flares up. I just don't know. But the original good results you experienced could have been due to the preds working well to contain any inflamation caused by by your osteoarthritis and now you have reduced, the inflamation simply has not enough preds to contain the inflamation any more, maybe that's a suggestion. Again I simply don't know. Instead of writing to your Dr, could you not book an emergency appointment thereby bringing forward your appointment. No patient should be left in such pain and in my opinion extreme pain is justifiable as an emergency appointment, and you could ask him if it's ok to increase your dose of preds. Also, do you know what his long term treatment plan was for you. I ask because he has prescribed preds, you are now down to 5mgs, then what? If he was going to take you off them altogether soon, what was he going to offer as medication in their place?
as for changing surgeries, prior to my diagnosis I was at a rubbish surgery and I won't go into how I was treated but quite clearly my GP had never heard of PMR because she didn't recognise a single sympton. When I was diagnosed by a rheumatologist I immediately changed surgeries as there was no way I was going to stay at the old one. The surgery I'm at is fantastic and every Dr and surgery nurse knows all about my condition in depth. so hopefully you will also strike it lucky when you move. It's 8.20am, I'd ring up the surgery and get an emergency appointment for today. Regards, christina
EileenH liz23617
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Both pred and all NSAIDs (non-steroidal antiinflammatory drugs of which ibuprofen is one) can irritate the stomach and cause bleeding. Used together the risk is increased. One lady ended up on hospital with a gastric bleed after 3 doses of ibuprofen - without pred at that point!
Christina - ibuprofen doesn't go for the liver, that's paracetamol, but ibuprofen isn't very good for the kidneys.
EileenH liz23617
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But in this time frame to be at 5mg having reduced in 5mg steps is far too low, too fast. That is how pred is used in other illnesses where it combats the inflammation abd then you stop taking it. The inflammation in PMR is ongoing in response to an underlying autoimmune issue - as long as that is happening you need some pred, enough to manage the symptoms acceptably. At this stage yoou should be on at least 10mg, possibly still 12.5mg. Then you wouldn't need the ibuprofen - not that that helps most of us. Pred acts as the pain-killer in PMR.
michele96336 EileenH
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tina-uk_cwall michele96336
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EileenH michele96336
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liz23617 EileenH
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