recovering adrenals.

[Sumojo]

I’ve recently settled on taking 5mg Pred for over a month, and now feel good. For the last few months I’ve had gradual weight loss, diarrhoea and fatigue. The diarrhoea has stopped so has the weight loss and only feel the need to sleep once for an hour or so during the day. Typical adrenal insufficiency signs. Have my adrenal glands started to work again? I’m loath to drop the dose any further. Been there done that before. I’m four years into this thing. I’d like to stay on Five mg but my doctor always gives me ‘that look’ I’ve been through major gluteal tendon reconstruction surgery four months ag and in five months I need to repeat on the other side. Shall I remain on this dose? I’m 79 is there a problem on staying on it forever? Quality of life.

[DorsetLady PMRGCAuk volunteer]

Have my adrenal glands started to work again?

Most probably, not 100% as yet, but enough for you notice a difference, so that’s good.. but it does take some time to get full function back.

Staying at 5mg sounds a good idea - certainly for a couple of months [to help adrenals] and then see how you feel approaching your surgery.

No great issue in staying on 5mg, but you may find you can reduce a little in time to come- and even a small decrease would probably make GP happier - but as you say QOL is paramount [no matter what age].

[Sumojo in reply to DorsetLady]

Thank you so much for your reply. After four years and attempts at going lower than 5 with no success, I wonder at the futility of it all sometimes.

[PMRpro Ambassador]

Because I have probably been on a lot higher dose for a lot longer than you, I would say sticking at 5mg indefinitely probably won't be a problem. You have not told us much about how long you have had PMR and been on pred so I can't comment more than that. But a very slow reduction with very small steps is always something that should be considered because I think if you CAN get lower, then you should try.

[Sumojo in reply to PMRpro]

I’ve been battling this for four years now. I must say I experienced all the side effects, thin, easily torn skin being the most long lasting so I know the downside of Pred. But at the age I am now and the awful tendon issues (maybe pred assisted) I’ve had to contend with and more up coming surgery, I feel as if it’s not going to be too detrimental, I could give up trying to decrease the Pred further.

This site has been my saviour throughout my ‘journey’ because I’ve had no information from the medical profession. I thank you for being so patient and answering the same questions asked over again with so much patience. It means more than you can ever know.

[PMRpro Ambassador in reply to Sumojo]

Why we are here

[lisbonportugal in reply to Sumojo]

Hi again Sumojo,

Do you think the gluteal tears are from Prednisone? I feel like mine is!Is there a lot of recovery from this? I know I ask a lot of questions but can't get answers from a doctor...except NO Surgery. I am suffering. 💔Sasha

[Sumojo in reply to lisbonportugal]

Hi, Sasha, I definitely feel as if my gluteal tears are from taking Pred. The surgeon agreed it could be Pred that has weakened them until they completely tore. The other side has gone exactly the same! The surgery isn’t easy. The recovery is long but after the first month or so I could walk unaided although eight weeks is about the norm. Sleeping for that length of time on your back isn’t easy. I’m four months in from surgery and am walking 4 or 5 kilometres a day with little discomfort on the operated glute. I’m supposed to protect the as yet unoperated side to prevent it worsening. If it gets too badly retracted reattachment is almost impossible. Have had an MRI yet to ascertain the tears?

Good luck in the future and if your surgeon will agree to do the operation I think it’s worth while. It’s either that or end up with a mobility scooter!

Cheers Sue

[lisbonportugal in reply to Sumojo]

Thank you so much for write me back so quickly. Yes, I had an MRI. I was then diagnosed with the Glute tear only on one side. The pain began 2 months ago! The pain never goes away. I am not sure why it would not heal to some bearable level?

Did your tear come on suddenly? Were you in terrible pain for a length of time before making the decision to have surgery? What method did the surgeon take?

Thank you a million for taking your time. Sasha

[piglette]

I would try 0.5mg drop when you have nothing important happening and you feel good. It is worth giving it a go.

[Sumojo in reply to piglette]

Yes, I probably will try to drop a little after the next surgery.

[piglette in reply to Sumojo]

Good luck with the surgery.

[SheffieldJane]

I would be tempted to stay at 5 mgs until I recover from the second surgery. Feeling balanced and good is quite rare in my experience.

[Sumojo in reply to SheffieldJane]

That’s so true. Feeling relatively normal is a blessing

[SheffieldJane in reply to Sumojo]

Slather on the moisturiser for your tender skin. I love organic Aloe Vera gel - I moisturise everywhere from the top of my head to the tips of my toes. It helps.

[Steal]

I'm also down to 5mg and have been for 3 months.Just recently started to feel 'relatively normal' again, with more energy, much less brain fog and more positive mental attitude.However this improvement also coincided with stopping Leflunomide, although I believe this has caused problems which are still with me. Firstly, diarrhoea which has developed into microscopic colitis, very distressing, watery stools, come at random, unstoppable loss of bowel control. Now much improved and I'm experimenting with low residue diet and occasional loperamide. Secondly, severe nerve damage affecting ulnar nerve and giving pain, muscle wastage and reduced dexterity in hands (veg prep, writing, etc problematic.)

I did some research on these issues and basically self-diagnosed and tactfully suggested to GP. Got NHS colonoscopy which confirmed the microscopic colitis. Had to go private for neurology (about 18 months waiting list NHS) and even more tactfully suggested Leflunomide as a cause and once he had done tests and done his homework said that Lef was a possible, even probable cause. Although rare. Slight signs of improvement but he said could take a long time, and he will monitor to check whether anything else is implicated.

Sorry Sumojo, I've gone off piste rather. Let's celebrate feeling good and enjoy it while it lasts.

[PMRpro Ambassador in reply to Steal]

Hmm - leflunomide causing neuropathy doesn't seem to be that rare to me judging by the experiences of PMR patients put onto it. It is a small population but enough cases to make me wonder what the rate is overall. I couldn't cope with methotrexate but my need for pred was rising and I did offer to try leflunomide despite the fact it scares me silly. But my rheumy said no, cut to the chase and said we'd try what we KNEW would work, tocilizumab. Because he can. And because of that, the thought of having to return to the UK where I WOULDN'T get it is rather daunting.

[Sumojo in reply to Steal]

Hi, yes feeling relatively normal is amazing. Fingers crossed it lasts. There is certainly some trepidation in reducing further

[DrRon]

I am eager to jump in Sumo, since my PMR duration and treatment sounds similar. Four yrs with PMR, & have been @ 4mg, my happy place, I call it, for 1 yr, and had my best yr with almost no pain. However, I also agree to go on Methotrexate 1 yr ago. That was to diminish my dependency on Pred. Without it, I would still be @ 10mg or more Pred. MTX was prescribed as well for RA because my hands were suddenly hit with pain and swelling. At 4mg I just want to stay there, I am 81 yrs old, and like you, quality of life is a significant factor. Recently again, my rheumatologist asked me at least to alternate days between 3 and 4mg to move me down. I get it. It would be great to be off Pred. and still pain free. So I am working at this ... still enjoying life now. All the best with your surgery I trust. -- I agree with you re: value of this site & DorsetLady and PMRpro are wise, and the counsel of many other sufferers has often been more encouraging and beneficial than some professionals. Ron

[Sumojo in reply to DrRon]

Hi, Ron, I think if I was on 4mg I’d be quite satisfied to stay there. I DO NOT want to go back to where I’ve been. I do believe the Pred has damaged my body however, but as there’s no alternative other than pain it’s a no-brainer as we say in Australia. And let’s face it, we’ve not got that many good years once we’re over eighty, so please let them be free from agonising pain. I expect to deal with normal aches and pains though and I’m realistic enough to accept my aching knees and hips😂

All the best, Sue

[lisbonportugal]

Hi Sumojo,

I have torn my gluteal tendon and I am in tremendous pain. My doctor said he would not do reconstruction surgery because I'm on Prednisone and the stitches and staples will not hold. "! He also said because of my age! I am 79 also.🥀

Questions;

Did your stitches/staples hold to reconstruct the tendon?

Was your surgery successful?

Were you in unbearable pain from the tea before the surgery?

Is the Gluteal Tendon tear a result of taking Prednisone or having PMR?

Or, did you fall?

I'm trying to figure this all out while in so much pain. I hope you will answer when you get a minute. Thank you so much, Sasha🌻

🌷🍂

[Sumojo in reply to lisbonportugal]

Hi again, Sasha, sorry I read your other reply first. Answers to your questions:Yes the stitches held, but he uses a different system to the others I’ve read about. Google Open Gluteal repair using LARS.

Yes it was successful.

Yes I was in a lot of pain before the operation. However I had steroid injections that helped enormously with the pain.

No, I did not fall. So what else could it be that weakened the tendons so badly but Pred. It’s a pity that I still need to take it although only 5mg now.

Sue

[lisbonportugal in reply to Sumojo]

Dear Sue,

I am on 10 mg now and have been on Prednisone for 3 years! I have tried to get off this awful steroid but haven't been able to so far. I have had almost every side effect that is listed.

Sasha🌿

[Sumojo in reply to lisbonportugal]

Hi Sasha, me too. My skin is paper thin now, which is the worst side effect other than weakening tendons so badly 😢

[lisbonportugal]

My skin thin that when I even brush against something my skin tears off. Does it get better since you tapered to 5mg ?

[Sumojo in reply to lisbonportugal]

Hi Sasha, I’d love to assure you about the skin problem improving but as yet I’ve not noticed. However I’m so aware I try really hard not to get close to anything which will scratch or scrape. I’ve bought arm protective sleeves but inevitably forget to wear them 😂

[PMRpro Ambassador in reply to lisbonportugal]

My skin has improved since about 8mg.

[lisbonportugal]

Thank you again, Sumojo for talking to me like a friend. I am feel alone with dispare about the PMR and Prednisone, and the gluteal tear. Sasha

[Sumojo in reply to lisbonportugal]

Hi, Sasha, you are most welcome. You too have made me feel less alone as I had not heard of anyone else with gluteal tears through steroid use. Some people are very susceptible to some of the effects of Pred. It’s sometimes nice to have company even though you don’t wish others to go through the pain. Please feel free to keep in touch. and let me know how you progress. Re the surgery please get a second opinion from another surgeon and explain the repair using LARS that I mentioned earlier. The first reaction from my surgeon was “for little old ladies we usually suggest a walking stick or motorised scooter!” I soon told him what I thought about that! Be your own advocate and find someone who’ll help you.

Sue.

[PMRpro Ambassador in reply to Sumojo]

Think I would have reported him for inappropriate language!

[Merryfield in reply to Sumojo]

up that guy’s giggy with a twiggy for wanting to motorize scooter you!