Never a days illness, now this!!

Posted , 11 users are following.

Hi all i think i need your help ,i think my husband has pmr and he is really suffering, going back to docters tommorow to get xray results.my husband has never had a days illness in his life and now he is in so much pain and he is not handling it very well. I am a chronic pain suffer have been for years, he has watched over me and see the pain that i am in. the problem is he is now depressed and if the docter gives him the results im hopeing he dosnt have.i dont know how he going to handle it, what are your symtons[cant spell] could anyone help me with this, and how you cope with this illness

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  • Posted

    hello to you both

    I think the best advice to you is join the local PMR group as especially if they have male members Jim will feel much better talking to them

    This is an illness of ups and downs I was feeling quite confident when I started my latest reduction on Wed but today I have taken an extra mg as have felt very tired

    I like Betty had this before never really realised why I got it but because I recovered in 2 years when i got it again after abut 4 years I thought it would be the same but 2 years later I am nowhere near coming of steroids I am very lucky that my husband is alwways cheerful and fingers crossed fit ( climbing up high ladders to cut down trees today !! and he is 62 soon ) so he lifts me when I am down

    It cant be easy if you have ill health also which is why he could do with some outside help

    When I saw the Consultant he wouldnt give me steroids until all my I think 17 !! blood tests had come back to rule out anything else then he authorised my steroids

    I dont know about holidays and being of sick but once Jim gets another sick certificate to tide him over until the steroids kick in you will know what is happenning A lot of people on here do work with PMR but it all depends on the job I should think

    Best wishes

    Mrs G

  • Posted

    Sorry Mrs. G I can't help seeing your husband lifting you physically up the ladder as well as emotionally. Isn't English a wonderful language?

    Did anyone else see the letter in the Telegraph about the ladybird house?

    \"The hole in this house is big enough for ladybirds up to wren and bluetits size\".

    It was made in China.

    Laughter is the best medicine :lol:

  • Posted

    Hi everone jim went to his gp today his first appointment with his gp after seeing the specialist, i seem to recall the specialist saying he was going to start jim of at 15mg steriods and gave jim a letter to give to the docter to say this patient to be started on 15mg but after having to wait on an appointment for ever, the docter has only wrote on his prescription 5mg that didnt put all the pain away last time, i thought the gp had to give you what the specialist stated..i hope this works for him god bless you all MARGARETANN
  • Posted

    Hello Margaret Ann

    5mg can never be the correct daily dose for PMR

    Prendisolone tablets come in 1mg 2.5 mg and 5mg So the largest tablet that could be given is 5mg The normal way of starting is with 15mg (3x5 tablets ) after breakfast

    My prescription will only say a certain no of 1 mg 2.5 or 5mg tablets it wont say how many to take It always says as instructed byyour Dr

    So are you sure the Dr didnt intend him to take 3 tablets daily ?????

    Check quickly with the Dr or if necessary the Consultants Secretary as it is important to get this dose correct at the beginning or Jim wont get any benefit from this

    As Ive said before I write thing down in the Drs my blood results and doseage I am aiming for when she wants to see me again and when I am supposed to have my next blood tests etc

    So make sure Jim didnt misunderstand the Dr ( there is a lot to take in when you are new to this ) otherwise the Dr is in the wrong going against the Consultant and should be told so

    Hope you get this sorted quickly else all your efforts will be in vain !!

    Best wishes

    Mrs G

  • Posted

    Hi Margaretann

    I suspect there is some misunderstanding going on here. Although the GP has written out a prescription for 5mg tablets (as Mrs G has already said, the tablets come in 5mg, 2.5mg and 1mg doses) then Jim can still take 3 of those tablets daily thus totalling the 15mgs normal daily starting dose for PMR as recommended by the consultant. As we all reduce our doses then we take a mixture of all the different size tablets to reach our necessary dose. Hope this makes sense....Jim needs to start on 15mgs daily as recommended by the consultant if he is to get any long-term relief of his pain.

    Very best wishes to you both.

    MrsO

  • Posted

    Margaretann

    Something I should also have added:

    When Jim take the 15mg dose (3 tablets each of 5mg) the tablets should all be taken at the same time early in the morning either with or immediately following breakfast.

    We expect to hear from you that within a few hours of taking the dose Jim is jumping for joy (well perhaps not quite jumping! :lol: ) at the relief of most of his pain.

    MrsO

  • Posted

    Hi everyone,

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  • Posted

    Hello Margaret Ann

    Im really pleased we have helped I know my prescriptions show a mixture of the tablets I need as I only see my Dr every 2 months now and not how much I need to take Just as instructed by your Dr on them and as I am reducing slowly I never know what I will need

    We are not allowed repeat prescriptions on steroids at my Surgery as one Dr didnt do all the necessary health checks you should have on a regular basis so I always have to talke to the Dr

    We will all be keeping our fingers crossed that this helps Jim Do let us know how he is getting on

    Best wishes

    Mrs G

  • Posted

    Hello Margaretann

    Please don't feel silly - we all feel so confused when we start out on this journey and that's just not us it's the medics too sometimes!

    Now I don't want to add more confusion here but must just add that Jim should also have been prescribed a stomach protection tablet called Omeprazole or Lansoprazole and a bone protection tablet such as Calci-chew. Unusually (I think!) I was unable to tolerate the stomach protection tablets so I have always eaten a live yoghurt with my breakfast immediately before taking the steroids - so far, after 3.5 years it has worked - can't see what is happening inside my stomach :lol: but so far no apparent symptoms.

    Also, Jim should have been given a blue steroid card to keep with him at all times on which each current dose should be recorded. If he hasn't been given one by either the consultant or the GP then the pharmacist usually keeps a stock so will be able to give you one.

    Do hope pain-free days (at least 70% improved) are ahead for Jim now and do come back and let us know how he is getting on.

    Bestest wishes!

    MrsO

  • Posted

    Hi MrsO,

    Don't want to cause any more confusion but it isn't essential to be given the omeprazole if you are using the enteric coated tablets (the coloured ones) - and Jim should only be on them to start with (GP permitting!). They don't dissolve in the stomach but in the lower part of the gut so the problem is minimised. I've been on pred for 14 months now with no problem and I use up to 2x1mg tablets to adjust the dose as I'm going down. It is better to try and keep the number of medications to a minimum to avoid interactions etc. I don't think you are alone in having stomach probs with omeprazole and its friends. I do have a sore stomach as soon as I try taking 10mg of the white tablets so I'm not totally immune to the problem. That's why I stock up on plenty when I'm back in GB to avoid the risk of running out - you only get the plain tablets here!

    He will need the calcium with vit D tablets. And in case anyone got worried by the article last week about increased risk of heart disease and stroke with taking calcium supplements - the analysis did not include supplements that had vit D in them so is biased in its conclusions. Interestingly, whilst there is little evidence that calcium supplements alone prevent fractures and some evidence to suggest there is an increase in the rate of heart disease/stroke the results are different when it is supplements with vit D in them. Then half the studies show a reduction in fractures and none of the studies suggest a heart/stroke problem. So there you are!

    enjoy the sun,

    EileenH

  • Posted

    Hallo margaretann Mrs. O wrote [quote:33310a8540] I have always eaten a live yoghurt with my breakfast immediately before taking the steroids - so far, after 3.5 years it has worked - can't see what is happening inside my stomach but so far no apparent symptoms.

    [/quote:33310a8540] Me,too. I buy the big size Yeo Valley organic from Tesco. The pots are much in demand for freezer storage.

    I didn't know there were enteric coated tabs until I came on here but it seems they are not always the answer. For at least two of us the yoghurt is.

    NB I don't have shares in Yeo Valley more's the pity.

    Jim. Good luck and hope to hear good news on the pain front, soon. BettyE

  • Posted

    Hi Eileen

    When my GP first prescribed Prednisolone he said I had to ensure I had stomach protection even though the tablets were enteric coated!. Of course, you take their word for it as at the outset of the disease you are stepping into a completely alien world not to mention how ill you feel.

    At my first appointment with the Consultant I told him I had had problems with first the Lansoprazole and then with the Omnaprozole. His response was \"Well don't take it my dear\" to which I said that I had been told the side effects of the steroids and didn't want to have a burnt out stomach. He countered \"I've never seen a case of that yet\"! When I told the GP he said that I should start back on the tablets again as soon as I ran into problems. It was a relief to stop them and put my faith in the yoghurt with such success that, as Betty has said, it must sound as though we've got shares in Yeo Valley!

    Of course, we all live and learn so much along our journeys with PMR/GCA and we are all so lucky on this forum to have you to share your scientific knowledge with us. Whilst on that subject, you referred to full fat and skimmed milk in one of your posts which was very interesting. Did I read it right that although the skimmed milk has more calcium you need the fat from the full fat milk to carry the calcium into your bones? I was pondering on this some time after reading it and then couldn't find it again.

    Absolutely gorgeous weather here again today so I've walked along the Thames towpathwith my bare arms and absorbed the Vit D!!

    MrsO

  • Posted

    Hi MrsO,

    How nice to hear you've had a nice day - it's getting here, slowly, there's an avalanche risk somewhere nearish and this morning was only just above freezing. To compensate there isn't a cloud in the sky!

    Yes - you got it right. Unless there is some fat present the body doesn't absorb the calcium properly so the red-top rubbish that just sort of dilutes your nice cup of tea isn't doing you any good. Semi-skimmed is the way to go if you are worried about your dairy fat intake and if you really want the full fat stuff (I can't do that in tea either) then there's no reason not to - 4% fat is still not a \"high fat food\"!

    As for the gastric protection bit - some people think that it is something more to do with the total dose of steroids present in the body which leads to the gastric erosion so that would mean enteric/not enteric pills is irrelevant. I'd say - wait until you have a bit of a twinge BUT then DON'T DELAY. If you don't need it it's one less pill to worry about and they have side-effects too. And I could take out shares in yoghurt companies too. Trouble here it's so sweet it's awful! Has anyone tried a machine? Lakeland do one that looks good.

    have a nice evening, glass of wine on the patio maybe? :lol:

    EileenH

  • Posted

    Hello again Eileen

    Thanks for repeating the info about the milk - perhaps I will switch from my fat-free yoghurt to at least a low fat one as with osteopenia I think it's now more important to protect the bones as opposed to worrying about a bit of weight gain.

    Somewhere at the back of my cupboards I have a yoghurt-making machine: six little pots with orange lids. I used to make it years ago and if I remember rightly I used to make it overnight with sour milk and one pot of yoghurt - it was delicious and simple to make but I think I must have got lazy with age! I wouldn't like the sweet-tasting yoghurt you say is available in Italy either.....yuk. Perhaps you should have a go with the machine.

    With your temperatures so low I expect you've got those skis overhauled and ready to go!

    MrsO

  • Posted

    Hi Margaretann and Jim,

    Just a quickie to say I do hope that Jim has found some relief from the pain and stiffness since he started on the steroids yesterday. I've got my fingers crossed for you both, you seem to have had such a rough time.

    Take care and best wishes

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