Advice please

Hi Stephen,

Re your symptoms returning about 3 am, you might try splitting your dose. There are numerous posts on this forum about that. Many seem to use 2/3 at breakfast and 1/3 in the evening.....but you would need to experiment to see what your body likes. 

Just a thought.....

The post-op muscle problems are a different thing though you are quite right to think about it. It should start immediately after the anaesthetic wears off. If there is a delay it is less likely.. Even Tramadol doesn't help PMR though!

Thanks Eileen. The pain and stiffness was pretty instantaneous after surgery and just got progressively worse,  I do remember the orthopaedic surgion saying that he’s seen this type of reaction on muscles following surgery but didn’t say why it happens. 

Hi EileenH

I did some research on anaesthesia and it says if someone is given Succynilcholine during the op it causes pain in the muscles post op which can be severe and it can last for a while after......

Yes it is a possibility. The surgery was done at the same hospital and it was the orthopaedic surgion who referred me to the rhumatologist so I’m sure they can find out. It’s all such a worry and there are many conditions which present similiar symptoms but I guess all will become clear once the blood results are back.  But the high blood pressure worries me it remains consistently high and I don’t know yet whether the 2 are related or not.  I will try to bring my appointment forward with rhumatologist and book some holidays from work next week  whilst I’m feeling at my worst.  I will keep you posted and thanks for listening as i have at least somewhere to turn and I’m grateful for that. 

Hi michelle06124

Prednisolone causes high blood pressure too. Your GP and a Rheumatologist will be aware of this. If you are put on preds you may be prescribed a blood pressure med such as Ramipiril or the like...I hope you get things sorted soon so you know where you are and can deal with whatever the problem is...

Yes that's right - and since michelle now says the joint pain started immediately after surgery I wonder if it could be that. But I suspect the surgeon wasn't thinking of that but a reactive arthritis - which is another possibility. 

Michelle - you also say it is JOINTS that are causing your problems. Or have I misunderstood? That isn't the thing most people with PMR identify as the major problem.

Yes it’s terrible joint pain and stiffness in all the joints as well as pain in the tissues in my arms,calf’s and thighs. My wrist joints swelled yesterday. I have pain in my neck and across my shoulders and getting up and sitting down is a real problem due to a combination of stiffness and pain. I rang the hospital this morning and found out that the rhumatologist has an open clinic tomorrow so I’m booked in and I found out that some of my results are back so I’m not leaving without some answers tomorrow and medication. I will let you know what how it goes. 

Hi Michelle, I hope you get some answers tomorrow! I will be interested in how you go, thanks for sharing.

All the best. Will be thinking of you.

Micelle06123, I hope you get some answers. Please let us know

Hello ladies/gents - I saw the rhumatologist today who was extremely put out that I had brought my appointment forward by a week. I had an awful experience with him. I told him that I couldn’t go another week feeling as I do and that I was no longer taking painkillers as they didn’t help and had started my IBS off recently. I told him I’ve been struggling driving to work, struggling at work, not sleeping etcI asked him Coukd he confirm what I had and could he give me something today he asked me what have I done about my high BP so I gave him my ECG Report which stated it was normal and I showed him the twice daily readings of BP which still show it consistently very high and said that the GP is reviewing all the data on Friday. I asked him  again if he had my results and he ignored the question a 2nd time and said I looked poorly and how long have I had a cold !!! I told him I’d just come from the cold into the warmth and it’s made my nose run and that I didn’t have a cold, he said you do I can see it streaming and proceeded to preach me the news about the flu pandemic and I should be doing something about my cold unless I wanted to end up in hospital. I could feel myself getting worked up and I told him again it wasn’t a cold and please could I have my results. He confirmed I had  PMR as he had thought at the initial consultation but that it was deemed mild inflammation ( though the pain is far from mild) but ok maybe it could be a lot worse,   he told me I can’t precribe  you the treatment as you have a COLD  and he says he wouldn’t be allowed too.  Aargh I was in tears by this time as I couldn’t convince him otherwise, he wasn’t budging. He told me he would send my results to the GP with a recommended dosage of 20mg Pred for a trial period  of 2 weeks. He said my  GP will have  to put me on medication for BP as the Pred increases it as you said and a tablet for my IBS as the Pred will effect it and a calcium tablet as it was low. He also recommended a 24 hr heart monitor then said keep taking the painkillers. ( he told me again as he did at my 1st appointment  they were short staffed so could I email his secretary to ensure the info was sent to my GP for Friday) as for the painkillers I told him I don’t want the painkillers and he tried to force a prescription of tremadol on me but I refused. He said come back after the trial of 2 weeks. He said the inflammation is mild it should take about a year to go completely.  I left wishing someone had come along with me. I had a bit of a meltdown when I left the hospital I just couldn’t get over his bad attitude and lack of empathy. Luckily my GP has repeated the tests and will hopefully give me better guidance and more detail about the results on Friday as well as the medication. Roll on Friday. Xx

Oh, Michelle, that's appalling.  You shouldn't have to deal with that kind of treatment.  Good for you resisting a prescription for a serious med which doesn't work and I'm shocked the man would try to force it on you.  Although he wouldn't give you pred because you "had a cold".   

Fingers crossed you GP helps you get a handle on everything and better treatment.  

What a prat! What difference does it make if the appt was this week or next week? One appt is one apt. I would be putting in a PALS complaint and asking to see sometone else - preferably not in his department but at another hospital. Unless your GP is willing to deal with it all now you have a dx.

You cannot classify how severe the inflammation is by the blood markers - mine were stubbornly in normal range even when I couldn't move. Nor is it an indication of how long the underlying autoimmue disorder will last - and that is what dictates how long you need pred, not how severe the inflammation is.

Exactly WHY you can't start pred with a cold (that isn't a cold) is beyond me and actually - you MAY, if you are lucky, find the IBS improves, you wouldn't be the first. As for Tramadol - trying to force that on you is appalling. But maybe you should have accepted the script and then not cashed it in. I'm not sure I'd recommend lying to a doctor but sometimes being reticent is a good move! Choose your battles.

Eileen, if the consultant is recommending that the GP prescribes 20mg because he said it’s MILD inflammation ( thanks for your info on that) I’m learning fast about this condition from you and fellow members. Is there a preferred make up of the tablets that I should ask for that will make it easier for when it comes to tapering? 

Many thanks 

Michelle n

Dear Michelle, I cannot believe your rheumatologist, what total drivel. He must have been drunk or starting to go GaGa.

 

STARTING???????????????

Not sure what you mean. In the UK you get pred in plain white uncoated tablets and as enteric coated which are less upsetting to stomachs - but if you have IBS the enteric coated may not work as well for you as they are absorbed further down the gut which may mean you don't absorb them as well because of the IBS..

The plain tablets come as 5mg and 1mg - and chemists sell pill cutters so you can get 2.5mg or 1/2mg by cutting one. Then you make up the dose by 4x5mg for 20mg for example. Most people manage to get to 15mg via 17.5mg easily enough, cutting a 5mg tablet - allowing about a month at each dose. From 15mg I would reduce 1mg at a time - top experts say no reduction in a taper like this should be more than 10% of the current dose and at 15 that is already only 1.5mg and fiddly. Some doctors will push you to try straight to 12.5mg and then 10mg. It may work and you can try it. If it doesn't work you can go back and try again with a bit less. The certain fact is that by the time you get to 15mg you need to have 1mg tablets from there on just in case!

Hi michelle06123

Most unethical! To treat you in such a way is appalling. I would have taken the script for the tramadol just to prove they did nothing for the pain. He was as good as calling you a liar by saying you had a cold when you told him you did not. My nose always runs in cold weather when outdoors. I'm so sorry your appointment with him was fruitless and a total waste of time and money!...I sincerely hope you can get a firm diagnosis soon..

Thanks Eileen, would you know approx how long does someone stay on the  starting dose before tapering down? 

Hi All

.....meant 'as apposed to 2,400mg Ibuprofen'...not 2,4000mg......apologies for misrepresentation.....

Hi All

Should have mentioned Flarin is a combination of Ibuprofen and lipids fatty substances in tbe body. It's mechanism of action is working through the lymphatic system and bypassing the stomach to shield it from gastric bleeding...

You stay at the starting dose for about a month or up to 6 weeks - or until all the symptoms have reduced as  much as they are going to and, if you have raised blood markers, they have fallen to normal range and are stable. Then you can start to reduce slowly to find the lowest dose that gives the same result. Experts say each taper step should not be more than 10% of the current dose but many people are easily able to reduce but 2.5mg from 20 to 17.5 and then 15mg. Then smaller steps seem to be better. It may appear slow to some doctors but if it avoids flares of symptoms due to steroid withdrawal problems then it ISN'T slow. It is best to stay at each new dose for up to a month to be sure it is still enough to manage the symptoms.

Pred doesn't change anything in the actual underlying disease process, that chugs away in the background and still causes the fatigue and sweats and so on. The pred is purely managing the inflammatin so you get a better quality of life until the autoimmune part burns out and goes into remission which can happen in anything from about 2 to 6 years for up to 75% of patients. About half take up to 4 to 6 years, new research has shown that one third of patients still need some pred at 6 year. You are NEVER aiming for zero straight away and any doctor who says you must get off pred asap because it is dangerous needs to be avoided! At PMR doses there are no extra effects due to pred, other than formation of cataracts, that wouldn't have been found in an age-matched group of people not taking pred over the same time. If you rush the taper your symptoms will flare and you will end up going back to a higher dose - and it all takes longer.

Thanks Eileen that’s really helpful. So the GP will do more blood tests around 6 weeks  that will inform when it safe to taper? I was never sure whether the sweats were my  menapausal night sweats or related to this condition. Even they have been erratic since I’ve had this problem.  Do you suggest any good vitamin supplements that may help? I take currently cod liver oil with primrose oil daily? X 

No - I don't contribute to the big money-making business of "supplements"! You need calcium and vit D, possibly vit K2 for bones, The rest should be covered by a good diet. 

Yes I know what you mean. The ghastly consultant did say my calcium was too low and that my GP should be put me on a calcium tablet, but I’m trying to improve  the milk intake, I tend to limit dairy due to chronic sinusitis as it triggers it. X

If dairy bothers you, you can get calcium from other things, easy to google a helpful list of non-dairy sources of calcium.  Liquid milk is, btw, not the best source anyway.  

If you are taking cod liver oil you may not need another Vitamin D supplement, or perhaps not as much as otherwise recommended.  Check to see what your daily intake of D is at the moment.  

I’m furious!! I went to the GP this morning for my treatment and that darn rhumatologist hadn’t sent the blood results or an email to my Doctor with the recommendations for treatment  ready for my GP appointment as he promised too. I saw him Tuesday. The GP did a blood test their and then which has been sent off so I hopefully will get the ESR result back by the end of day so that he can diagnose and give me the treatment. I’ve rang and emailed the hospital to send the test results to them ASAP and I will just have to wait until my GP calls me later to go back. I am now going to write to BUPA about the terribly  poor treatment I’ve had with this  rhumatologist from word go.  I’m so frustrated. 🙈

Hi michelle06123

You have been treated in a very bad way. That Rheumatologist should be taken to task over this. You should send a complaint to BUPA and request a refund because you did not get the medical service that was promised you. I can imagine the frustration you are going through. hope you get your ESR blood result this evening....

Thanks Mary, yes I complained to BUPA today about him and they advised me to put the complaint in writing to the hospital. I got my medication just before the GPS surgery closed. I’ve requested a copy of the results. BUPA have  referred me to another Rhumatologist at a different hospital for the follow up in 2 weeks. 

Hi Eileen,  I had to complain to BUPA when the results didn’t arrive to my GP today as promised and when they eventuality did get sent after BUPA prompting the hospital, the surgery was closing and I was left with a prescription at the desk  for a 2 week supply of Pred 15 mg. May I ask is it best to take them in the morning or evening or doesn’t it matter? 

Kind regards

Michelle  

Hi michelle06123

Yes, put your complaint in writing, you may save a lot of other patients the stress and anxiety you have experienced. I am so pleased you have your medication. I was always advised to take preds at 8a.m. but Eileen may have alternative advice for you.....

Mary is right, the standard advice when starting pred for PMR is to take the full dose in the early morning with food.  It's important you have food, or at least something like yoghurt, to line your stomach.  Also, don't take any calcium supplement at the same time as they interfere with each other.  I take my calcium in two doses either lunch or supper and with a bedtime snack.  The calcium near bedtime helps me sleep  and I always have a little milk then as well, and a small helping of plain yoghurt.  

Thank you, ok 8 am it is,  that’s good to know  about the calcium.  Not sure where I would be without this forum and your advice and reassurance at the moment. 

It was three months before I found out about the calcium - from this forum!  I was pretty annoyed as this, of course, is when we are at our highest dose of pred and we are told our bones are most vulnerable at the beginning anyway, no matter the dose.  I hope you get a quick result from your pred.  I started to feel better within a few hours, but it was very subtle and I thought I was imagining it.  By the third day I knew it was true, I was much better! 

It is recommended to take all 15mg at once in the morning, from experience as early in the morning as possible. The new daily batch of cytokines is shed in the body at about 4.30am - the sooner you take the pred after that the less work it has to do clearing it out. For some people the effect may not last the full 24 hours and later splitting the dose may work better to allow freedom from pain. However, you start with all at once.

The usual "8am" timing advice is because in short term use of pred that reduces the suppressive effect on the adrenal function. We are on pred for so long there is bound to be adrenal suppression so that becomes less significant.

I did notice a subtle difference to the pain In my shoulders it didn’t feel as severe and I also didn’t wake up as much with the pain but I’ve had a bad stomach though all morning. I was prescribed omeprazole to take before the pred.  

Omeprazole can cause an upset stomach.

Really !! It was the rhumy that asked the Dr to prescribe it me and funnily enough the Dr said  he wouldn’t of prescribed it himself as he didn’t think it would help but he gave it me anyway. 

It seems to be fairly standard practice in the UK to hand out industrial quantities of pills along with pred, supposedly to manage the potential side effects. Many of them are not always needed. 

I have never taken omeprazole or alendronic acid - I have no stomach problems nor changes in bone density. Had I taken them it would have been a waste of money and exposed me to unnecessary side effects.

Hi michelle06123

Were you prescribed any meds for your high blood pressure?..because preds will raise your blood pressure....

No the GP worked out my average which was 139/88 and asked me to continue monitoring and recording it twice a day for 2 more weeks. He was reluctant to give me something that I would potentially have to take for a long time.