Tetraplegic (U.S. Quadriplegic) with PMR and now steroid-induced Osteoporosis, s-i Diabetes and s.i. Adrenal Insufficiency

[bioneck]

So....long story, sorry everyone if I am wearing my heart on my sleeve!

Life hasn't been a picnic since I broke my neck twenty-four years ago this month. Left with two teenagers of 13 and 18 after my father died followed by the sudden death fifteen days later of my husband, I had somehow to get on with life. My mother came to live with us until she died of Alzheimer's. All these events and several others added to my stress and depression. Meanwhile, I was finally diagnosed with Polymyalgia Rheumatica. From memory, I was given 25mg prednisolone to take daily which eased my problems almost immediately. As I continued taking that dose, I puffed up like a balloon and ate like a horse; not the best when wheelchair-bound and unable to expend energy. I was left on that dose for about two years, barely recognising myself in the mirror but wondering at the lack of lines on my face (I was about 55 by then) until a friend said that I had a steroid facelift!! My cushingoid appearance and size put me off wanting to go anywhere. Eventually, the head of my practice noticed the dose I'd been on and I was put on the path of reducing my steroids. I got back to a reasonable size but I dare not lose too much weight for fear of pressure sores. Fairly quickly, I got down to 7.5mg and then 5mg. I also started developing other symptoms. First, it was determined that I had steroid-induced adrenal insufficiency - I was put on methotrexate. Then, I was found to have osteoporosis, induced by steroids primarily but also because I am unable to weight bear (my calcium levels are fine). Then I was told I was diabetic. This, I managed at first by dieting. However, despite being careful about what I eat, I now have it back again and have learnt that this, too, is likely to be steroid induced. I tried earlier in the year to reduce my steroids. I was all right with 4.5mg but started aching where I can feel, namely my shoulders, arms and neck, on 4.mg. I've been told that I'll have to take prednisolone for the rest of my life as my own adrenal system won't kick in unless I'm down to under 4 mg and probably as low as 2.5mg. I take anti-depressants and sleeping tablets, too and rattle like a chemist shop. So, there you have it, a cautionary tale....in brief.... on steroid dependence! Personally, against the advice of one doctor who told me I was a hypochondriac and to stop looking up my symptoms on Google, I say become enabled with the help of Google so you can ask your doctors the right questions before you become steroid-dependant!

Perhaps, if you've had a similar experience regarding steroid dependence and will have to be on them for life but have nevertheless magically kicked the habit, you'd be kind enough to relate your story here of how you succeeded (or any other, for that matter).

[SheffieldJane]

I am unable to sleep and came across your amazing story of bravery and resilience. I couldn’t help picking out some nonsense advice and treatment that you have been given, particularly regarding your Adrenal function and the threats about Pred dependency. I realise that I am too tired to go through your post with care but I was blown away by your story and the inadequacy of some of your so called care. I just want to send you some love though and I will be back with the rest of our UK contingent tomorrow. Please stick around. Xx

[bioneck in reply to SheffieldJane]

Thank you so much, Jane. Like you, I'm exhausted but awake at silly o'clock! I look forward to hearing from you when you can muster the strength and have a rested mind. My sleeping tablets have long ago lost their efficacy! Brain fog to the max. and terrified of dementia. Please sleep well. xx

[Hidden]

Hello, I’ve also joined the “wide awake club”, saw your post and wanted to send you a message. I am sorry for the way you have been treated by the medical profession and also glad you’ve found this support group, it is full of kind and caring people, who are experts in their illnesses and who are always at the ready to provide empathy, advice and support. I cannot comment on the steroid dependence as I am newly prescribed, and just starting out on my PMR learning curve and all it entails, but as SJ has said there will be hands on deck for you later today. Sending love and care to you 🌺

[123-go]

I have to say that your story moved me so much. Your bravery and resilience are incredible and deserve high praise.

[SnazzyD]

I agree with all of the other posts about your bravery in the face of relentless traumas. To add to your woes there has been some monumental medical negligence. If you feel able, there is probably a case to file, at the very least a formal complaint. To have left someone who is non-weight bearing, or anybody for that matter, on 25mg for two years with no monitoring or advice on how to prevent weight gain and diabetes is just terrible. Did they do any bone density scans prior to starting? It isn’t just a case of healthy eating and cutting down. For a start it isn’t on ANY guideline for treating PMR. Now they have seen their mistake they tried to rush you off, risking adrenal insufficiency and another flare of PMR . Needing to reduce slowly to allow adrenal function to return and not expose autoimmune activity is not “dependence”. That rather puts the ‘blame’ on the patient when it is normal PMR management.

[Purplecrow]

Hi, also awake at "silly o'clock", no advice to add here, but I want to say I appreciate the challenges you have met on your journey.

All of them! From beginning to now!

You are an amazing woman and I send my unconditional positive regards.

💕Jerri

[PMRpro Ambassador]

To add to Snazzy's absoutely on point comments - there is no way they can say you are "steroid dependent" while you are still on 5-7mg - that replaces the amount of corticosteroid normally produced by the body to function normally so the adrenals don't produce more to reduce the risk of developing Cushings. It is a bit like having central heating and a wood burner in the room where the thermostat is - while the wood burner is on and producing heat, the thermostat keeps the boiling on stand by. Once the wood burner goes out and the room cools down the boiler isrequired again.

But you were left on a far too high dose for far too long - the reduction process should have started after about a month or 6 weeks. No wonder you have gained weight and developed diabetes - the way to reduce the risk of both is to cut carbs drastically. Healthy eating alone isn't enough - and low carb also works for people unable to exercise. It also helps reduce the inflammation level in the body. In fact, at 5mg you are now at a physiological dose - similar to the amount of cortisol the body must have to function. It is the past damage that needs to be sorted out - not the current one.

Would they tell someone with low thyroid function they were "thyroxine dependent", or a diabetic they were "insulin dependent" in the same tone of voice? At this stage, 5mg and below, the pred is a replacement therapy the same as thyroxine and insulin. It takes away a stigma that no chronically ill patient needs on top of everything else - you above all.

How long have you been on pred? I can't work it out from what you say - but there are people on the forums who have been on pred for years and still managed to get off. Whether I, after 15 years of PMR symptoms and 11+ years of pr, a lot of it above 10mg, will ever get off pred is the least of my problems! If I ever get to 5mg again (I have been there but when I tried to go lower I flared) I shall stop and accept it gratefully! Even if someone calls me steroid dependent.

[Fran_Benson Partner]

Sorry to hear your story but you're in the right place if you have any questions or experiences you want to share about your PMR. You might find this webinar by our president, Prof Dasgupta helpful too if you haven't already seen it pmrgca.co.uk/content/profda...

Fran

[bioneck]

Thank you all so very much for your kind words of encouragement but also for all the information, too. There is much to take in, consider and act upon! I can't thank you enough for taking the time to message me at such length. It's heading for 3 a.m. (quite early for me!) but I must try and sleep. Friday is upon us and I for one, need to make calls to various hospitals to find out if my appointments are going to be cancelled. This (i.e. PMR GCA LVV) and Covid-19, too!

Quick couple of questions before trying to go to sleep. I find that if someone touches the tops of my arms, I could scream with pain at any time of the day not just before I've taken my prednisolone. Anybody else experience the same within the umbrella of PMR?

I also suspect I have some form of vasculitis, possibly GCA. I definitely get jaw claudication and while I have reoirted this, nothing has been said or done by my doctors. I've also reported this to my Rheumatologist. Am I just being ignored or is taking 5mg of prednisolone the normal treatment? I have days were my eyes are brilliant not needing glasses except for tiny print, other days print on my television seems not blurred but ghosted.

Thank you so much once again for your help and kindness; so very much appreciated. I now wan to see my records to see the timelines of my PMR journey and my exact steroid intake. I fear that if I ask to see my records, I will be fobbed off!

[PMRpro Ambassador in reply to bioneck]

PMR is a vasculitis, probably just one presentation of GCA, they are certainly closely allied. 5mg pred isn't standard treatment for anything, it is the dose you may manage to taper to but not necessarily, it may be higher or lower depending on the person. However, GCA requires a higher starting dose to reduce the risk of visual loss before you taper the dose to the lowest dose that manages the symptoms adequately.

[nuigini in reply to bioneck]

I agree with all the comments on how absolutely terrible you've been treated. Appalling!! You are obviously very brave and courageous woman and should have been treated with the care and respect you deserve. Thank goodness you found this forum.

Don't be fobbed off in requesting your records. They are yours and you are legally entitled to have a copy.

Regarding your question about your upper arms, this is one of the main symptoms of PMR for me. Prior to being diagnosed I slept in a lounge chair for weeks because my arms were too painful to lie in bed. They were also very weak. I remember not being able to lift a dinner plate above shoulder height to put it in the cupboard. To this day increasing pain in my upper arms is a sign of a flare, along with pain in my neck and across my shoulders.

[SheffieldJane in reply to bioneck]

I am glad to see that advice and support is flowing towards you, picking up the points I was too weary to deal with. Under the Data Protection Act it is my belief that we are entitled to have full access to our medical notes and a formal application can be made. I hope that your appointments are not cancelled. In your place I would be keen to have the potential for LVGCA investigated as a matter of urgency. You have been neglected enough and deserve exemplary care from now on. In Leeds I have had various scans( MRI, CT) and a specialised Ultrasound Scan in spite of COVID restrictions. Where are you geographically?

[whitefishbay]

Wow. What a story. Your photo and story should be in the dictionary for resilience. All I can say is get off white carbs and slowly slowly reduce the pred. The experts will be along with excellent advice. Hang in there.

[bioneck]

Do any of you kind people who have commented here find that stress brings on flares? I've dumped the white carbs because of the diabetes though I had no idea that they could cause further inflammation!

Once again, thank you so very much to you all for posting here. I've leant and picked up several tips. You're all diamonds! Take care of yourselves. xx

P.S. Since being on prednisolone, as mentioned before, I now have osteoporosis and osteopenia. Last year, doing passive exercises with my legs as I can't move a muscle, my care pushed my knee up towards my chest and broke the thickest part of my femur diagonally across (not the head of femur). I now have titanium plates and an a 8-9 inch scar. Three years ago, another carer (God rest her soul) brike my tibia just above my ankle, whilst hoisting me - she failed to hear me say stop.