Getting worried

Hi everyone! Cold enough for you all? I went to GP today for a check up and by the time she'd finished with me I was almost on the verge of tears. I have been reducing preds from 12/5 mg to 11mg and then to 10mg every 3weeks. GP says that I now have to take some Vit D and I think she said methotrexate. She also said that I have to see dentist because my jawbone might be rotting and she is also arranging for me to have a bone scan not to mention a visit to optician because my eyes are really blurry since being on preds. Sorry to lay it on you all but since I was put on preds I have had nothing but negative news every time I see her. I think I would rather put up with the pain I had before preds, I mean, how does she know I have pmr? I've never seen a consultant before now I have to see them all! There! I feel better now that's of my chest. Thanks everyone for reading my rant . Sorry it's so long.

34 Replies

  • It's definitely too cold for me now, jjackdaw. Your posting has left me a little confused as you say you have not seen a consultant but the GP is talking about methotrexate? As far as I know, that can only be prescribed by a consultant - the surgery will fill repeat prescriptions, but cannot prescribe in the first place.

    I suspect first, that she might be reducing your steroids too quickly and second, that you are on alendronic acid? She does seem to pile it on a bit thick with the 'rotting jaw' remark, not something I would expect a professional doctor to say. And it is highly likely that she's right off the wall with that one.

    On the bright side, the Vit D prescription is bang up-to-date, most of us are deficient. Also a baseline eye check and dental check is a good way to go to establish something which can be checked again in the future.

    Where are you? Is there a support group near you?

  • Hi polkadot. I just replied to pmrpro and she said that methotrexate is not good, so I am going to refuse it. I rue the day I started these preds, I'm up and down like a yoyo and can't understand how the medical folk mess about with health with out explaining things to you. What I know now is what all of you have told me. Heyho I suppor things will pan out in the end. I Live in Cardiff and I don't know of any support group here, or of anyone else with this pmr disease. Thx again for reply. God bless.

  • Ah, Cardiff - that explains a bit! You are by no means the only one having problems in Wales!

    If you are reducing too quickly you will have pain - either a return of the PMR symptoms or what is called withdrawal pain from reducing the pred dose in too big steps. That possibly makes her think that you are steroid resistant and you need what is called a "steroid sparer" to be able to get your dose lower. If you reduce the pred dose in tiny steps it often works much better.

  • Thanks to your advice I am now reducing 1mg every 3 to 4 weeks. My pain is just about tolerable but I will persevere. I've suffered from multiple joint pain for over 40 years, head to toe. During that time gps said- growing pains, middle age, athritis, menopause and several other ailments they could thingk of, now it's pmr and every thing that goes with it. All I was ever prescribed was pain killers until they finally decided on preds. So I will reduce slowly and see what the future holds. Thanks again pmr. Will let you know what dose Vit D is when chemist brings my script later.

  • When you were started on the pred did you get a really big improvement in your pain? If you did and it is PMR then you will need pred to control it - and at a high enough dose. If it didn't make it much better, although that doesn't mean pain-free, then it probably wasn't PMR.

    But there are all sorts of things that cause joint pain like that - and for some of them methotrexate might help as it is the first line drug for several sorts of arthritis. When we said methotrexate isn't recommended that is for PMR - it is different for other things.

    Have you ever seen a rheumatologist? If you haven't then I think you ask to do so - because they don't stick to just pain killers except for osteoarthritis where there isn't a lot of choice.

  • When I started on preds my pain totally disappeared within 24 hours. It's coming back as I'm reducing. GP said yesterday that she's sending me to rheumatologist after Christmas so that's anyone's guess how long I have to wait for hospital appt.

  • Then stop reducing - your PMR is obviously still alive and well so if you lower the pred the symptoms will return. PMR is a chronic illness - it isn't "take pred for a few months and stop". I have had PMR for 10 years, 5 years on pred. Finally I can manage on 4mg but it has taken a long time to get there.

  • I think it's a case of being stuck between the devil and the deep blue sea. Your damned if you do and dammed if you don't with preds. I think I may try going back up to 15mg and see if that does the trick.

  • Why haven't you been referred to a rheumatologist? Is this always the same GP? Why is she saying all this?

    A GP obviously put you onto alendronic acid without doing a dexascan to check whether you needed it - if your vit D is very low that won't help any of what you have either. In some ways this is all positive - they are things that should have been done to start with. You should have been told to get checks at the optician because pred can cause raised eye pressures, like in glaucoma. The optician does the measurements and makes sure all is OK. Blurry vision is actually quite common with higher doses of pred.

    The one thing I would query is the methotrexate. There is little evidence it helps to reduce the pred dose in the long term and in the most recent guidelines is specifically not recommended any longer. Until you have real difficulty reducing below 10mg it need not be considered.

    But on the whole I think you need to regard this as a "good thing". These are things that should be done - some patients have to fight to get them and you are being offered them.

    Don't panic - you haven't been sent to the naughty corner yet! And polkadotcom has said the rest I would have said.

  • Thanks pmrpro. I will refuse the methotrexate because I saw that it wasn't highly recommended in other threads. GP also said to only take 1 vit d tab a week- what's the point of that? Unless she meant the methotrexate. Well I won t be seeing her again until after Christmas so I will ask to clarify.

  • If she is giving you very high dose vit D then sometimes you do only take one dose a week. And as polkadotcom says I'm fairly sure GPs can't give methotrexate without a consultant say so. If they can - then they shouldn't be able to!!

    After xmas is a month - what's she on???????

  • Now you know why I'm worried. The chemist is delivering my medication tomorrow so I don't know what dose the Vit d is, couldn't see to read prescription my eyes are so blurry now my specs are all but useless. Am going to opticians Friday.

  • If the chemist had to provide it and you have had to wait it suggests she has given you a high dose version - mostly the stuff is on the shelf. Make sure the delivery person tells you what it says. But taking one tablet a week instead of more won't kill you or do much damage for a few days.

    As Olive says - if you are having problems take someone with you into the consultation, preferably with a note pad. And never be afraid to ask.

    Have you tried moving your specs down your nose? I know it sounds crackers but it worked for me for reading!

  • I have just received medication and GP has given me accrete D3 film coated tabs for calcium and vitD. She told me yesterday to take one a week but the on the box says two a day. There are no methotrexate tabs so I havent a clue why she hasn't prescribed them after telling me to take them.

  • I had this feeling there wouldn't be any metho. It is prescribed by consultants rather than GPs and there are specific instructions and tests you need for the first few months of taking it. Perhaps she meant that she would suggest to the Rheumatologist that you needed a steroid sparing agent? There are several of these in general use - methotrexate is one - and are used to make the steroid work rather differently so that you can reduce the steroid dose faster. They are not all they are cracked up to be and some of them have side effects that make prednisolone look weak and feeble by comparison.

    Can you see what the amount of Vit D is in the tablet? It should be in the leaflet inside. If you are sure she said just once a week, maybe you should check with the surgery which dosage she meant.

    Yes, if you can take someone with you next time, do. It is worth it.

  • VitD is 1.5g twice a day. They're rather large, I will have to break them in half. The problem with GP is that she tells me so much in space of ten mins I can't take it all in.

  • I have been prescribed Accrete D3 which I take twice a day. Once a week sounds wrong to me. They are coated so although large do slip down quite easily.

  • I Hope there's no side effects I hate taking pills.

  • Vit D doesn't usually cause side effects. That sounds like a dose for once or twice a day - ring the pharmacist and ask him/her. Next time insist the GP either slows down so you can write it down or tell her to write it down. I think you probably misheard/misunderstood.

    But the pharmacist is the port of call for the moment.

  • Yes - if she mentioned metho in the same sentence, that would be the one she meant as it's taken once a week, not the vit D which does sound like a twice a day one.

  • I have had no side effects, which is a nice change. The only thing is you need to leave at least two if not three hours between taking the vit D and taking the pred. It is actually written on the outside of my pred box.

  • I have had no side effects, which is a nice change. The only thing is you need to leave at least two if not three hours between taking the vit D and taking the pred. It is actually written on the outside of my pred box.

  • Thanks for that piglet, will take them mid morning and early evening. I'll be rattling soon with all these pills lol. No wonder I'm putting on weight!

  • Sending you a big hug.Next time you have to go to GP do you have a trusted friend or family who can go with you I never go to a appointment alone always have someone in the room on my side


  • I always go alone but I think I will take my sister next time. Thanks for reply, it's nice to know that you are all out there, a virtual cyber shoulder to comfort when needed. God bless.

  • Jjackdaw stay strong. I suspect you have been prescribed alandronic acid to help with bones when taking steroids. The idea I gather of being put on methotrexate is that it's a steroid sparing drug. The steroids do a good job but with cumulative side effects. I can't get below 20mg of preds so was put on methotrexate but it didn't work for me. I have now started on Azathriaprine @ 50mg/day and need to build up to 150mg over the next 4 weeks. I also have had to up my steroids to 30mg/day. I also had issues with blurry vision and even spent £200 on new glasses that was wasted as your eyes do alter when on preds. PMR is a miserable disease and you will face ups and downs. I guess we all want I quick fix, I know I do, but my experience so far is that is not likely. I hope you get sorted soon and I would certainly recommend asking your doctor to arrange for you to see a rheumatologist.

  • Thanks for reply grigser GP is arranging rheumatologist appt but that won't happen until after Christmas. pmrpro has given some good advice to me, she is very knowledgeable about this disease and has told me that methotrexate is not that helpful so I will go with the flow and hope things improve.

  • We all feel for you. It's clear from all the replies. Try to adhere to the advice you have been given here. This forum has helped me so much. Eventually it seems to all come together. The medicine becomes routine (and actually helps), you learn to intuitively know what you need, and there is a type of mental acceptance of the underlying disease, including all the attendant doctors and what the disease requires of you. Through the help of this forum I am finally "there." You will get there as well. Try to get through these few months. As PolkaDot says at least your doctor is thinking about all the problems which this disease and the Pred can make you encounter even if she could use a dose of bed side manner!

  • I saw a new Rheumy a two months ago. Top notch, double specialty, immunologist & rheumatologist. I was feeling extremely tired with burning in the backs of my legs and my forearms felt like wet noodles. I told him I felt like I had MS? He advised upping pred back to 12 and adding methotrexate. I was on 8mg pred at the time. Anyway, I declined the offer and preferred remaining on my current reduction regime because I felt I could deal with life as it stood. Within a week of that visit I felt well again and so continued my reduction plan. I am now at 5mg. I do have shoulder, neck and leg pain but NOT NEAR WHAT IT WAS LIKE. It's more like the aches and pains I got from overwork or stress when I was still in the workforce. Anyway, I wanted to share this story for two reasons. First, I could have hugged this giant of a man when his reply to me at refusing his drug orders was, "Well there are different approaches to this disease and your decision is fine" Second. I am happy to have gone with my gut feelings about not taking more drugs unless I absolutely could not cope. This past week after reducing to 5 I felt tired, unmotivated and was waking up with shoulder pain. I thought Oh OH this may be the flare everyone here talks about. However I decided to carry on a bit. Yesterday I felt terrific! I started my day at 7:30 am, band practice from 9 to 11:30, lunch out with friends, concert from 2 to 4 and party from 4 to 6:30. I got home still feeling well. Today I hurt a little but am off again to another concert. I do hope this progress is not an illusion and the monster pain returns with a vengeance. I keep hoping I will be one of the "lucky" ones who has a milder form of the disease. Any comments are most welcome...please

  • At this stage I'd stick at each dose for several weeks at least - the pain/grottiness was probably steroid withdrawal pain and is settling well. But from here on your body is having to get used to producing its own cortisol and the adrenal glands are needed to wake up. That is also a cause of the tiredness and lack of motivation. 1mg at a time now is over 20%, way above the recommended 10% - cutting them in half will help there too, or taking old dose one day, new dose one day for a week or two should reduce the shock to the system.

    But what a lovely rheumy, and with some knowledge of immunology - luxury indeed! Another one who should be cloned...

  • Hi greylife, thanks for replying. What you just told me has given me a lift. I live alone and have too much time on my hands, that's probably part of my inability to get to grips with the preds and this disease. I don't understand it , if wasn't for all you lovely people on here talking me through it I'd be lost. So no more sitting here stewing, I'm going to get my life back and deal with it. So glad you're going forward. Take care and God bless.

  • If you can't manage your old hobbies consider finding others. One lady on the NE forum who lives not a million miles from you has taken up card making - a long way from the walking and "Outward bound" type activities she was doing when PMR hit and which obviously became impossible. She also makes jewelry. And has raised a lot of money for charities as a result.

    Do you live in Cardiff itself or just nearby?

  • Evening jjackdaw. i just wonder if you use Northeast Support Group, a super forum for advice & a might have been mentioned in one of the post but not sure.I wish you well for your journey.Dave

  • Thanks Dave. I live in Cardiff Wales and I don't know of any support group here but I have all of you lovely people on here and you are all a great help to me. You're never alone with a phone lol.

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