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Dealing With The Pain - Weaning From Prednisone

Posted , 13 users are following.

sandy82540
sandy82540

I'm 53, living in Canada, and was diagnosed with PMR over six months ago after living with pain throughout my body for over a year.  I was originally prescribed 40 mg of Prednisone to alleviate my symptoms - and it worked wonderfully!  However, due to an existing medical condition (Diabetes) it became obvious that I could no longer take Prednisone!  So, under my doctor's guidance, the long weaning process began - I reduced x 5 mg every two weeks from 40 mg to 20 mg, then x 2.5 mg from 20 mg to 10 mg and finally x 1 mg from 10 mg to 5 mg, once 5 mg's is reached I will see my physician.  

I am currently at 8 mg and am suffering greatly with, what I believe is withdrawal / weaning pain from Prednisone!

My neck and shoulders burn daily from approximately 2:00 pm onward, until I go to bed - 10:00 pm. I feel generally unwell and am suffering from severe muscle cramps in both my legs!

I'm at a loss as to how to fix this?  Unfortunately, it's not an option for me to "up" my Prednisone dosage and was hoping someone on this amazing forum would have some advice for me regarding a natural means to reduce my pain, or at least tell me that what I'm feeling is normal and will go away once I've completely weaned from Prednisone?

I'm not used to feeling unwell and to be perfectly honest I'm tired of feeling this way.  I no longer have half the energy I used to have and feel as though I've become a different person.  

I sincerely apologize to all reading this about sounding whiny.

Sandy

1 like, 28 replies

28 Replies

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  • paula63201
    paula63201 sandy82540

    Posted

    My sympathies to you for all that pain!

    I don't think it is just withdrawal, since it is very rare for PMR to go into remission after 6 months. That is so vry quickly. It is probably the PMR showing up again, after having had symptoms suppressed and inflammation contained by Prednisone and now it is showing up again.

    Others may have words of widsom for you.

    While undiagnosed with PMR and in acute pain, having tried all kinds of painkillers (that did not help), I went for acupuncture. It appeared to help, although not like a magic bullet and not dramatically.

    Hot baths helped, also. My husband had to get me in and out of the tub.

    Others will have more helpful advice.

    Hang in there,

    Paula

     

    • sandy82540
      sandy82540 paula63201

      Posted

      Thank you so much for your suggestion of acupuncture.  I will look into it.

      Sandy

  • tina-uk_cwall
    tina-uk_cwall sandy82540

    Posted

    Hello sandy, sorry to hear that you are feeling so unwell but may I first ask why you were prescribed such a high dose of prednisolone if you were only diagnosed with PMR. The normal dose is 15mgs and normally that dose is adequate to elevate the PMR symtoms. I do however appreciate that sometimes this dose is insufficient but in such cases the dose is raised, it is unusual to be put on 40mgs right from the start.

    are you type 1 or 2 diabetic? Prednisolone and diabetes are not happy bed fellows but after careful adjusting can be used albeit with extra care.

    what medication does your Dr plan to treat you with when you are weaned off preds, surely they are not just going to leave you with PMR untreated!? PMR is caused by an auto immune condition that attacks the joints and large muscles which results in inflamation that in turn causes the pain. This auto immune condition cannot be cured, but hopefully it will burn itself out in 3+ years but in the meantime we are prescribed preds (steriods) as they are the only medication that reduces the inflamation and so elevates us of the pain of the inflamation.

    if you really do have PMR, in my opinion the pain you are suffering from is nothing as positive as withdrawel. It is the inflamation because you are on no way as high a dose as you should be on to control the inflammation. You have only been on preds for 6 months so to reduce from 40mgs to 8mgs is way to fast a reduction, albeit you say you are being weaned off.

    i'm sorry sandy but in my opinion you need to see a Dr who has experience of PMR because from what I am reading you are not receiving anything like a care plan that is correct for this condition, diabetic or not. You need to see a specialist ASAP who will have the experience of dealing with multiple medical conditions because as I said diabetes is a problem when being treated with preds but it's not impossible, it simply takes regulating. All the best, tina 

    • FlipDover_Aust
      FlipDover_Aust tina-uk_cwall

      Posted

      Hi Tina,

      I started on 50mg of pred for a week, down 5mg weekly for a month, then on 'normal' reduction of 2.5mg pre fortnight etc....I guess it all depends on your GP. It worked brilliantly.

      Given I'm 9 months in and still on 12.5mg -13mg daily I'm not convinced that 15mg would have 'cut the mustard' in the early days.

    • constance.de
      constance.de tina-uk_cwall

      Posted

      Hi Tina.  It is not sooo unusual to start on 40 mgs pred.  I started on 40 mgs and had to reduce extremely slowly.  Perhaps it depends how high the ESR and CRP are.  Mine were 132 and 100+ respectively, and they increased and increased, even on pred.  It took many months, two stays in hospital, and a frustrated doctor (who looks after me amazingly!) to get down to a reasonable level.  As is often said on this site - we are all different.

      Regards for C.

    • sandy82540
      sandy82540 tina-uk_cwall

      Posted

      Hi Tina,

      Thank you for responding...

      A little background on me :-)

      Prior to me being diagnosed with PMR I had been in extreme pain for approximately 1 year, frequent trips back and forth to my GP checking for arthritis et al all came back negative!  It wasn't until she ordered a nuclear full-body bone scan (MRI) that all the inflamation showed up - I had it throughout my body - joints.  My pain was such that I could barely walk, that, coupled with the headaches prompted her to prescribe the 40 mg of Prednisone, I then went on a waiting list to see a Rhuematologist.  Because of my career I'm not without some influence so within 2 weeks I was scheduled to see a well-known Rheumatoid Specialist here in Toronto working out of one of the large hospitals.  It was the RA Specialist that started the decrease in my dosage mostly due to my sugar being so high (31.1 mmol/L). 

      I've been a type 2 diabetic for close to 20 years and have been avoiding insulin injections so far by the skin of my teeth, my diabetes isn't a result of me being over weight, I'm actually a petite woman, my pancreas picks and chooses when it wants to work, eventually it will stop working all together but until then I'm currently taking 2000 mg Metformin along with other meds to help control my sugar.

      My RA Specialist has discussed other possibilities (Methotrexate) but nothing has been implemented yet.  I totally agree with you about the speed in which I'm being reduced from the Prednisone but, I experienced life-threatening complications that so far has landed me in hospital 3 times with my sugar so high that I risked coma.  My GP, Cardiologist and RA Specialist have all agreed that me and Prednisone do not mix well!

      So my dilemma is that I'm being rushed through the reducing process and suffering with the discomfort associated with it.

      Thank you so much for responding to me, it's much appreciated.

      Sandy

    • gillian_25383
      gillian_25383 sandy82540

      Posted

      Hi Sandy,are you restricted at all as to what painkillers you can take.Currently I am on paracetamol and tramadol.Does not kill the pain completely but enough to allow me to function.Had to come off prednisolone due to side effects including huge weight gain which is not desirable as I had a heart attack last year.Referred back to rheumatologist who 3 weeks ago put me on methotrexate which I started two weeks ago.Told it can take up to 3 months to work and to keep on analgesics.Touch wood not too bad as so far side effects have been limited to nausea on day after the dose.

      worth a try if rheatologist suggests it.Doing insulin injections you won't mind the frequent blood tests

    • lodgerUK_NE
      lodgerUK_NE sandy82540

      Posted

      Ask  your Medics, to investigate TOCILZUMB, currently undergoing trials

      One of our people volunteered for the Clinical Trial being conducted in our Hospital.  We won't know the results of the trials for some years, but she was clear of GCA within 18 months.  Nobody conducting the trials knows whether she had pred and TCZ, pred and a placebo or just pred. You can use your search engine and type in TCZ Trials. 

      It is already approved for RA>

    • tina-uk_cwall
      tina-uk_cwall sandy82540

      Posted

      Hello sandy, thanks for your reply. You mention that along with the pain throughout your body you also suffered from headaches. Could you also have been diagnosed with GCA too, accounting for the high dose of preds, 40mgs.

      i've seen Eileen's reply below and she has mentioned a low carb diet that really is most important for diabetics. Has your specialist suggested a session with a dietitian, they may be able to help your diet planning and that in turn could help keep your blood sugars more regular.

      there is also the option of steriod injections. I don't know much about this option, or how well they work but that may provide some pain relief.

      but that aside all your specialists must come up with an answer or solution soon. Inflamation within the body has its own risks and my friend who is a Dr always says to me that she has personally witnessed situations whereby a patient has been very very seriously ill and drs have used their skills to stabilise the patient and patients have pulled through where there really was no hope. I think that's fantastic. So all your specialists must get their heads together to sort something out for you because you cannot be left in such extreme pain or your blood sugars to not be regular.

      i wish you all the best, regards, tina

    • sandy82540
      sandy82540 gillian_25383

      Posted

      Hi Gillian,

      I have been prescribed Statex (Morphine) and Tylenol #3 for the pain.  It takes the edge off but, due to the addictive qualities of both these drugs, I try to persevere with the pain as much as I'm able.

      I've been lucky with the weight gain aspect of Prednisone, so far, I've only gained 7 lbs and I believe it's mostly water, I did start to develop "moon face" and noticed that my cheeks had a decidedly "chipmunk" look to them, but since my reducing it's not as prominent as it was.

      Regards,

      Sandy

       

  • Mrs.Mac-Canada
    Mrs.Mac-Canada sandy82540

    Posted

    Hi Sandy, 

    I'm so sorry you are suffering so much pain.  I know that prednisone really plays with your sugars and many people have trouble expecially at high doses.

    40mg is quite a high initial dose to treat PMR.  It is usually 15 to 20mg.  Generally if you show improvement of 70% within a day or two they conclude it is PMR.  I believe that is because higher doses will improve RA / LORA symptoms as well as some other medical problems. 

    I believe prednisone is the only drug so far that gets rid of the inflammation that is causing the pain.  I'm sure you'll hear from others with experience with diabetes that may have some suggestions.  I wonder how you would make out at a lower dose of prednisone used in conjunction with methotrexate (sp??) or paquenil (sp??) that are called steriod sparing drugs and in come cases (although I hear not many) have been known to help people that have a difficult time with prednisone.  I think you can also get prednisone by injection but I'm not familiar with that either.

    I certainly hope one of our resident experts will be along with suggestions for you.  In the mean time know that you are not alone and you are DEFINITELY NOT whiney.   We all go through times when we wonder what to happend to us. 

    Hugs, Diana

    • sandy82540
      sandy82540 Mrs.Mac-Canada

      Posted

      Hi Diana,

      I have to admit I don't know what "LORA" is?

      I think my Specialist is playing the "wait and see" game with me.  My next scheduled appointment with her is Sept 28th, provided I don't have a "flare up" (her words) then I'm to go and see her immediately.

      The strange thing is that I'm able to differentiate between the two pains - the pain before Prednisone and the pain I'm now experiencing are quite different?

      Thank you for your kind words.

      Sandy

       

  • lodgerUK_NE
    lodgerUK_NE sandy82540

    Posted

    Sandy

    go to the pinned section on this site by following this link http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    Then follow the link to the North East website and send an email for two reduction plans (free of charge).  Whilst you are on that site read up on the BSR Guidelines for the Diagnosis and Treatment of PMR.  This wil give you some knowledge.

    I will reply, in length as soon as possible but with a bit of luck and a fair wind, both EileenH and MrsO will come along before I can get back to you.

    Do not despair, help is at hand on this site.

  • FlipDover_Aust
    FlipDover_Aust sandy82540

    Posted

    I hear you Sandy. This is a pain in the ar$s condition that has completely thrown me too. I'm 51 so I completely understand how upsetting it is it be so unwell at this age. NOT ACCEPTABLE! :-)

    Not only am I unable to live my 'normal' life, I'm getting so fat from the pred I can't do the things I COULD do even with PMR. Very depressing.

    I look in the mirror and see a fat, sick old woman, and I nearly cry.

    • sandy82540
      sandy82540 FlipDover_Aust

      Posted

      I've done the very same thing as you...look in the mirror and hardly recognize myself...I look sad!

      Sandy

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