Pain & more pain

Hello, recently diagnosed with PR & GCA and put on 5 mil once a day of prednisone, now put on 10 mil once a day. Not sure if I should take 5 in morning & 5 at night, Originally the Medrol pack gave me horrific side effects but the low dose of prednisone helps a little. The pain & stiffness is awfully, my groin is making walking almost impossible, all of this just came on out of nowhere. I'm female 63 very active or at least I was. I begin feeling the effects of meds late in the day, I feel best all night before bedtime &mornings are a killer for me so wondering if I should space out the meds. Also every few weeks I get this head pain, cannot comb my hair or touch the head. I'm having a hard time understanding what is happening to me & while I am under a Rheumatologists care I am not happy with him & searching for another.

Thanks everyone!

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  • Welcome to the family which no one wants to belong to! It sounds to me like you are not on enough Pred. The usual starting dose is 15-20 mgs. Per day. It also sounds like you might be having some symptoms that suggest GCA such as tender scalp and head pain. I am not an expert in GCA, but it is usually very urgent to get high doses of steroids to prevent any damage to your sight. At the very least you should consult your GP asap.

    This can all come as quite a shock, but what I have learnt is that we have to inform ourselves because there are a lot of doctors out there who don't seem to understand these conditions very well. I am on my 4 th Rheumy as I have found some useless ones in my local area!

    Good luck!

  • Hi Suzy,

    I agree with you. This is my first, very uncommunicative and not at all willing to answer many of my questions so waiting for my GP to recommend another.

  • If you have GCA 10 mg is a very low dose. It's rather low even for PMR. There will be others along with more expertise, but I gather that for GCA 60 mg is more common, and for PMR the suggested start dose closer to 15 or 20 mg. In all of these cases you would expect to stay on the starting dose for several weeks, certainly over a month, to clear up the inflammation as much as possible. In some cases the initial dose has to be increased somewhat, particularly if GCA is involved. If you have ANY vision problems, go immediately to your emergency department. This is treated as a medical emergency as serious as a stroke or heart attack.

  • As the others say, you are on a very low dose for newly diagnosed PMR, the aim is to get the inflammation under control and if the dose is too low it is a total waste of time. A good starting dose of medrol is around 12mg-16mg which is equivalent to 15-20mg of the pred people normally take. 4mg Medrol = 5mg prednisone.

    Also as the others say you do mention symptoms of GCA where you should be taking a much higher dose of steroids. GCA can cause blindness and a proper dose of pred will stop this. Did your doctor diagnose GCA? If so I think I would be checking in with someone who knows a bit more about GCA very quickly.

  • I so appreciate all of these comments and definitely going to go back to Dr asap to take care of it. I was not happy with this first one & will be looking for another but meanwhile I really need to get on the right dose.

    When given the medrol pack I had horrible hallucinations, absolutely no sleep & overall very nervous so they tapered me down. I will definitely take the higher dose in the early am as I am usually awake several times a night anyway.

    Thank you everyone I don't feel so alone or helpless knowing I can get answers here.

  • If you have been told you have GCA then you need much more than 10mg - and the symptoms of scalp pain you describe do suggest that it is far more than "just" PMR so you definitely need a competent rheumatologist who will manage it aggressively before you develop visual problems. Yes, the Medrol pack may have given you horrible side effects, Medrol was hell for me too ( I was relatively fine on prednsione as opposed to methyl prednisolone or Medrol), but none of the side effects were worse than potentially losing your sight.

    The recommended way to take pred in PMR and GCA is as a single dose as early in the morning as possible. The cytokines that cause the inflammation are shed in the body at about 4.30am and the sooner you take the pred after that and the bigger the dose the quicker the symptoms will improve. Some people set an alarm and take it very early and then settle down for a couple of hours to let it start to work - and their morning is better. The optimum time is felt to be 2am - if you can be bothered to wake up and take it! I do know people who do and says it works well - and if yo are at your best in the evening on the dose you are on it should help a lot.

    You should have been started on at least 15mg for PMR - and for GCA a dose of 40mg is needed to reduce the inflammation quickly to reduce the risk to your sight. That 15mg should have resulted in a big improvement in your symptoms. Too little is not protecting you from the bad side of pred, it is merely risking the side effects with no benefits to counterbalance them.

    This link

    patient.info/forums/discuss...

    will take you to a post on another forum with links to a lot of reliable info so you can educate yourself. I would suggest you take the "Bristol paper" listed there to your PCP (you are in the US aren't you?) or to your rheumy if they are approachable as a matter of urgency and discuss the potential diagnosis of GCA and the symptoms along with this expert's approach. It may be that one or other of them will be sensible enough to see that what is on offer for you at the moment isn't adequate for the symptoms you are displaying.

    As the others have said - in the meantime, if you have any increase in the symptoms, if the intermittent head pains return or if there are ANY visual effects/symptoms please go straight to the ER (weekend or nights, whatever), tell them your presumptive diagnosis and how you are being managed - and take the Bristol paper just in case. An eye specialist may also be more use than your current rheumy if you can find a good one.

    And ask any other questions you have.

  • i was put on 50 mg as suspected TA Biopsy Negative surprise surprise.....but mayb her doc is easing you gently up to high dosage. Which I wish they had done with me.....had terrible side effects ......no sleep for four days in hospital b4 Biopsy....felt barking mad hyper.....colours separating in my vision now in chronic withdrawal coz dr took me off due to serious risk to my damaged spine (Spondylolisthesis) etc. Been a crazy whirlwind fortnight with a spinal spasm added that landed my on all fours under the shower in bathtub Cripes glad I'm off it and my doc said if False Negative it's too bad...he says the risk to me is worse than the benefits.....good luck I hope you can discuss wat u have read here with yr treating DR and see where he/she's heading with yr dosage.....my best wishes to you.

  • Just to gently note that medications for these two conditions would never be given at a low dosage to slowly bring a patient up to a higher dosage. :) This is really important as a lower dose is pretty much useless for GCA, which needs immediate higher dose steroids or there are very serious risks including loss of sight. A lower dose for PMR doesn't work either, people do need the start at a higher dose and slowly come down, generally over a period of a couple of years. I know this can seem hard for people but it is the way steroids work and also -- the side effects do reduce and things do get a lot better for most people. :)

  • Totally agree with Pipistrelle - there is no easy way to get onto Pred.

    The risk, if you have GCA, of doing that would be sight loss.

    Take it from someone who knows, the side effects of being on 80mg pales into insignificance compared to that!

    Losing the sight in one eye is difficult enough, losing both must be devastating.

    And as Heron says, GCA is a serious illness - not to messed with.

    Sorry to be so blunt, but my T-shirt's getting a bit old and raggedy!

  • And to add to pipistrelle and DL's comments - Medrol (methyl prednisolone) is not the only corticosteroid that can be used. I had awful side effects with it but none with the same doses of prednisone or prednisolone.

    The added methyl bit of the methyl prednisolone is supposed to make it a more effective antiinflammatory. I'd dispute that (it did almost nothing for me and let in a major flare despite using 20mg) but that also means that the side effects are intensified for the people who develop them. So use one of the others - you can use hydroxycortisone too except that must be dosed 2x daily.

    I do hope that your doctor changes his mindset if he ever comes across someone who has gone blind because of not being treated with pred.

  • Roger that, Yep as I said I was started on 50 mg ......but wat I found is there is a totally different attitude between GP handling and Hosp Drs handling.....my doctor acts like it's barely credible and my Hospital Drs were terrified I was gonna go blind the next day.....very confusing......๐Ÿ˜„๐Ÿ˜„๐Ÿ˜„

  • The hospital doctors probably have seen the disease before, and perhaps your GP hasn't. But it's great that you got the care you needed.

  • Please, I am reading every comment and sincerely appreciate all being said and anxiously awaiting speaking with my primary Dr tomorrow about this because my rheumatologist seems very lax. He has me going for a full body bone scan this week which im not sure why but I trust he knows what he's doing. I hate to think Im wasting time on the dose Im taking now but after all said here Im very concerned.

    Thank you all again!

  • It is normally recommended that if you start taking steroids for a while you should have a Dexascan to check your bone density, as a side effect of steroids can cause bone thinning and osteoporosis, so they need to see if you need some bone density enhancing drugs. You should also take vit D and calcium supplements even if your bone density is OK.

  • I'm sorry I forgot to mention that I have had severe osteoporosis for the past nine years. I had a hysterectomy at 39 & was on fosamax for almost 11yrs then taken off & I do take 1200 clacium with 1000 d daily. Haven t yet been told to take more.

  • Is it a full body bone scan or is it a dexascan? There is a great difference.

  • The script reads full body bone scan.

  • In which case I assume it is a bone scan using a radioactive tracer - that isn't to look at bone density. Did you doctor say why he wanted to do one?

  • No he did not say why but I plan on asking why before I go. I assumed it was necessary with the diagnosis unless he is looking for anything more.

  • You definitely need to know why you are to have this procedure as it is not without its own risks - the dye used could be harmful depending on your health. My stepmother had a procedure using dye I think it was for heart not bones, so different, but, still, the dye damaged her kidneys which must already have been at low function, but no one had checked. I'm not wanting to alarm you, just want to say that I hope you do not undergo a potentially invasive investigation without being fully informed. At least then you'll know why and what the benefits will be for you.

  • I totally agree with you & will be asking all the questions that have been suggested here. Thank you all again.

  • I imagine he is using it to rule out some of the nastier alternatives but it is rarely done in the UK unless there is good reason to suspect bone cancer or something like that. I'd want good reasoning - that he is not just doing all he can think of to charge your insurance (you are in the US aren't you?)

  • I am no expert but you're in luck because there are people on here who have a lot of experience and knowledge they can offer you :-)

    After reading the posts I just wanted to share what my experience has been as a comparison. When I was diagnosed with PMR I was started on 10 mg of Prednisone daily and after two days I was back to my old self, so for me that was the correct dose even though it is lower than the norm.

    When I was diagnosed with GCA I was put up to 60 and told to split the dose, two thirds in the morning and one third late afternoon, the reason being to have some prednisone active in your system around the clock - a dose will be active for about 20 hours, then the effects will diminish and the inflammation can go up during this period but with the second dose it will be kept under control. As you taper though and get down to 10 or below you go back to the once a day dosing so that the adrenals have a chance to wake up during that time when the Prednisone wears off.

    Your symptoms seem classic of GCA so please, please, please as other have suggested, see your doctor ASAP. You need to be on a high enough dose of Prednisone to be symptom free. For me it was 60 to start with but for some it can be 100 or even 120. And again as others have said, if you have any change in your vision go to the ER immediately.

    All the best!

  • Sorry, I didn't realize you have already been diagnosed with GCA, so you need to be on a much higher dose than 10. Good luck !

  • Sorry you have PMR. Me too just diagnosed PMR two weeks ago. I had headache for two weeks in Jan and no pain killer can ease the pain. Saw GP and was given Naproxen and co-dyramol and headache gone. Then I had a terrible stiff neck and whole body ache right down to both thighs. Difficult to move or sleep in bed. I still hang on for two more weeks, silly me. Went to see GP again and had blood test. Five days later I was confirmed I had PMR and given Pred 15mg daily. All in the morning. First week it troubled me in the morning from 2am till I took my dose after breakfast. Good days and bad days for a week. And I think the Pred is kicking in as I don't get pain in bed now and be able to sit up with no problem. A slight stiffness in the morning and I get a very good time afternoon. It's all varies. So don't get depress we don't want PMR but it came to us ๐Ÿ˜๐Ÿ˜‚ do a bit of movement with your neck shoulders arms and it hurts but help. If u can't lift your hand try to use the other hand to support your elbow to comb your hairs or exercise. I am 66 years old and very active before this. I still do a lot of walking. Hope u do.

    Good luck

    LM

  • Hello, I was experiencing so much the same as you . I too take my predict in am, I have been waking at six to first take my Zantac then immediately eat something small and take the predict. It would s now three weeks and I'm from balky able to move better, afternoons my best mornings still a little stiff but nothing like it was , only thing is the groin pain still comes and goes. As for my head I have small aches but haven't had the scalp pain in several weeks. That for me was intolerable, couldn't touch the back of my head and it lasted about two or three days. I will be 64 in July and really having had an active lifestyle am now trying to cope. It came on so suddenly, it was beyond scary and had no idea what it was until after so much blood work, extras etc and a relief to to finally know. Taking the predict is nothing short of a miracle but after reading how the pain may return after tapering it's kind of scary. Not sure how long my Dr will wait until he begins tapering me down but for now I'm taking one day at a time.

    Sincerely,

    Sha

    PS yes I too walk a lot as I feel so much better when I keep moving.

  • Hi there you can actually try some Ibuprofen gel for the neck and shoulders. It will take the pain off for a little while. Carry on doing it until the Pred is kicking in. Dr gave me three weeks worth of Pred and be going back to see him for follow up. I am sure I have to cope again when time comes. PMR hit me just like that. When the pain hit me I thought I was going to have a stroke. The pain was so great I thought the brain was going to shoot out of my head. Scary. The pain is under the control now and I have to monitor what I can do at home. If you find you got more pain in the next day is because you have over doing with your activities. The med is working. We have to adjust ourselves around PMR. Take care and soldier on. I had a friend Doris sadly past away before xmas and she always said soldier on. ๐Ÿ˜€๐Ÿ˜€

    LM

  • Thank you for info, I too am going back for my three week check, today I have a massive headache, usually it is just the back of my head but today it's the front and I just took extra strength Tylenol hoping it helps. I do not think I'm on a high enough dose, 10 mil a day, even though my pain has eased up after taking it for three weeks. He will probably up the dose when I see him. Your friend Doris passed on good advice, we have no other choice but to go on and be strong.๐Ÿ˜„

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