Unable to do less & less, any suggestions ?

[annie_marie]

Hello all you supportive helpful people. It's a month or so since I last posted, mostly because my time has been taken up with lots of hospital visits. I am just wondering if anyone else can throw some light on why I am so tired, even more than before I was diagnosed three years ago. My guess is that the advice which comes back is that my Prednisolone needs to be increased again, but as I have now been diagnosed with steroid myopathy as well as PMR/GCA I have had strict instructions from my rheumy that I MUST reduce down to twenty as quickly as possible.( I was at 40mg when he said this. He said to reduce by 10mg every fortnight). Instead of drops of 10mg I have been doing 5mg every week because I am in so much pain. My problem is this, I can sleep reasonably well, but wake very tired, get up have difficulty getting showered, dressed etc. sitting on the edge of the bed waiting for the next burst of enthusiasm to come so I can actually get down the stairs. ( I can only go down one stair at a time and can only crawl up like a baby very slowly).

After having some breakfast etc. I crawl back to the sofa and there I will spend my day!!! I am not depressed, I just haven't got the umph to do anything! I just seem to sit or lie for hours on end, not bored just empty !!. I was always very determined, a "doer" caring for everyone except myself probably. ( reading on this forum I think most of us were like that to some degree?) and that may be a big part of my problem, but I honestly just don't feel well enough to do anything. I have spoken with my GP who says I am between a rock and a hard place and just have to cope as best I can. I have been prescribed a pain block but because of lots of past neurological surgery it is one of the drugs I am sensitive to. I am very steroid responsive and the pred is making my glaucoma quite bad which in turn means more eye drops to keep the pressures down, which in turn gives me very sore eyes and vision. The GCA is under control at the dose I am on at the moment, (30mg) but I can't see where this is going, it seems there is no way out of the not so 'merry go round'. I have been given both methotrexate and azathioprine in the past, but neither agreed with me and just one tablet of azathioprine made me very ill indeed for weeks.

The other really annoying thing is I drip with sweat. Not very lady like I know ! But as soon as I move or try to do anything at all it pours off me as if I were in a rainforest. Is this a side effect of the steroid myopathy? Both my legs, feet, ankles, wrists and hands are so swollen/fat. My face is unrecognizable and I have a huge buffalo humped back. Not such a good look!

I would be very grateful for any help or suggestions. It is school holidays and my grandchildren whom I adore want to come and stay, but it's just not safe while I am like this. many thanks

[Runrig01]

I like you have pmr & GCA, and have developed steroid myopathy. I have been on Pred for 3.5yr, but never at high doses (long story). The steroid myopathy affects my thighs mainly, and within seconds of standing still I'm in severe pain, it also makes everything an effort and tires me out. I wouldn't increase your Pred to deal with the fatigue, it's purpose is to reduce inflammation and reduce pain and stiffness. It has very little impact on the tiredness that accompanies the illness. I find when I reduce my Pred by even a mg I feel my thighs improving. I have to do daily physio exercises to try and prevent further weakness. I suspect you too will feel strength return to your muscles as you reduce.

Most of us can empathise with the large moon face, and weight gain. I have gained 4 stone, since this illness started nearly 5 yr ago. Although 3 stone since Prednisolone started. I have an identical twin to remind me what I should look like, I hate mirrors and cameras. I try to remain positive and remind myself this should go into remission one day. I am in the middle of a flare of pmr symptoms at the moment which has caused a return of the exhaustion, but I know it will get better. Take care X

[annie_marie in reply to Runrig01]

Hi Runrig, Thank you so much for taking the time to reply. Such a lovely forum, with so many lovely people just trying to help everyone along the journey with these insidious illnesses. I had a lovely surprise this morning, I could actually see my ankles !!! the first time for weeks, even the swelling on my knees has gone down a little too. I'm not going to jump (Ha, if only!!) for joy just yet because it may just be that I have spent the last few days doing absolutely nothing, but I am very hopeful that it is the reduction of pred starting to take effect.

Many thanks again, I really appreciate the support. Best wishes to you. Annie

[suzy1959]

I am so sorry to hear how much you are suffering- as the GP says you are between a rock and a hard place.

I am wondering about the quality of your sleep since you are waking up tired. I was told by the Prof. that people with PMR and on steroids often don't get the deeper refreshing sleep. He put me on Amitriptyline which really sorted it out for me as the steroids kept me so awake! Another drug may not be the right thing for you but you may need to see what the docs can offer ?

Another way of looking at it might be that you used up all your energy looking after others before and now your body is demanding rest and that is what you need to give it!! Acceptance is a very difficult thing but fighting our bodies is the alternative and doesn't seem to be working !!

Good Luck!

[annie_marie in reply to suzy1959]

Hi Suzy, Many thanks for the reply. I am already taking 20mg of Amitriptyline but maybe it needs to be increased as I have taken it for some time and possibly I'm not getting the full benefit from the drug. I will ask my GP when I next speak to him. I think you are absolutely right it seems to be my body saying enough is enough, just have to take listen to what it's saying. !!! Thanks again, and all good wishes, Annie

[suzy1959 in reply to annie_marie]

I think it is worth checking the dosage- I'm on 35mgs and recently went up to 50 during a flare which helped me sleep despite the pain. I gather anything up to 100 is fine.

[polkadotcom]

Ask the doctor for some new blood tests to check on your magnesium, potassium and calcium levels to make sure they are up to the mark, and for vit D deficiency. Also a thyroid check. Low levels of all or any of those can make me feel like something the cat brought in, but I am lucky as my surgery is now aware that I can have these problems and I get regular blood checks.

[annie_marie in reply to polkadotcom]

Hi Polkadot, Many thanks for taking the time to reply. I will try and get the bloods done asap. I am hypothyroid and take 125 mcg thyroxine every day, so my thyroid should be okay, but will definitely get the others checked. Thanks again. Annie

[Hidden]

Dear Anne Marie

I am so sorry you are having such an awful time. At 50 mgs and then 40 for my GCA my head and neck were like someone dumped a bucket of water on my head. In all my life I have hardly ever perspired so don't like that one. I got the moon face and it went down at 20 mgs but I am back to 20 and I feel some edema in my face coming back and hoping it will stay away. I have gained 50 lbs and am lucky no buffalo hump.

At 20mgs I get some sweat at the back of my head in my hair but not much else.

Again I am so sorry and I hope someone can help with more answers.

HUGS!

Lin

[annie_marie in reply to Hidden]

Hi Lin.

Many thanks for the info. Just knowing that I'm not the only one who looks like they've just stepped out of the shower helps enormously, I had a nice surprise this morning, my ankles were visible, !!!! Hardly any swelling. I hope this means the toxicity is going down, time will tell. Thanks again, and best wishes and good luck with your GCA journey. Annie

[Greensleeves in reply to annie_marie]

Hi Annie ,

I'm sorry you're so tired and experiencing the awful sweating .

I've been on a maintenance dose of 5mg pred for a year now and still feel the awful fatigue and sweating . Was diagnosed 4 years ago .

I'm also a carer and feel so bad that I can't help my family members in need.

Blood tests have revealed abnormal LFT , so I have to have a scan on my liver and see a cardiologist.

I was suffering repeated uti's and seemed to be on Nitrofurantoin monthly so maybe they've damaged my liver ?

Anyway I've found drinking organic dried Dandelion Root tea absolutely amazing for getting rid of water . I actually had a thin face one evening after about 4 cups . It's delicious with a spot of honey .

Regarding the tiredness I'd ask for blood tests to check your iron levels and thyroid.

The sweating is something else , we must be permanently dehydrated! I was never a sweaty person either . It's terribly embarrassing.

I can't get rid of my awful fat stomach and the GP initially said Cushing's syndrome. Could be my liver , as I haven't touched any carbs or fattening foods . I'm living on salads and fruit and veg .

I wish we could get energy shots . I'd be there in a flash .

Enjoy sitting in the garden with your grandchildren and watching children's tv on rainy days .

Hope your health picks up soon .

xx

[PMRpro Ambassador in reply to Greensleeves]

I do wish they'd be more accurate about using the term "Cushing syndrome"! Cushing's is a disease where your body produces too much corticosteroid hormones and the excess causes the effects we are all so familiar with as side effects of taking pred. The effect of us taking pred produces the same effects as the disease - but it is obvious why: there is an excess of corticosteroids in our body because we are taking our tablets. There isn't an underlying disease process doing it.

The fat stomach is due to fat being deposited in that position - and if you are eating fruit and root veg then you could well have a fair bit of carbohydrate in your diet even though you don't think so. One large apple (3 1/4" diameter) has about 30g of carbs in it. A handful of grapes has nearly 20g and a 6" banana over 20g. Add that together and it comes to 70g usable carbs and you will have some more carbs in veggies too. To lose weight I have to be well below 50g carbs/day. I rarely eat fruit - if I do it is berries which are less carby than most fruit.

[Greensleeves in reply to PMRpro]

Hi PMRpro ,

Thanks so much for your invaluable advice as always.

I honestly didn't know fruit and root veg were carbs . I'm eating countless apples , putting them in the Nutribullet along with bananas !

Will stop that immediately and will study the carb make up of all fruit and vegetables from now on .

Hopefully the fat stomach should gradually diminish.

My GP is a half soaked idiot . Thank goodness I'm seeing one of the others . He has no bedside manner and actually stops me from asking questions due to the 10 minute slot , but I'm getting tests etc .

Have a great weekend.

We actually have sunshine today . x

[PMRpro Ambassador in reply to Greensleeves]

Keep hold of that sunshine - I won't be there until Tuesday!

Obviously you have a wonderful relationship with your GP...

[annie_marie in reply to Greensleeves]

Hi Greensleeves, Thank you very much for taking the time to reply to my post. It has been very useful. You mention the antibiotic Nitrofurantoin, I too take one tablet every night as a preventative from UTI. I have been taking this drug now for four years, constantly !! I take a pro biotic to try and put back some good bacteria, hoping that will counteract the bad side effects of permanently having antibiotic in my body. I have tried coming off the drug but the infection is just waiting to reappear. I have been offered surgery, but I need to feel well enough to go through any operation. I wonder if there is any link between the antibiotic and the illness? I will source the dandelion tea and let you know the results. thank you again. Annie

[Greensleeves in reply to annie_marie]

Hi Annie , I was also taking it nightly and when I could feel, with dread , the awful burning I'd self treat for 3 days . Then go back to one at night .

I've been very silly, but we do these things in desperation and don't realise the potential consequences.

I wasn't well enough for the cystoscopy either and couldn't see the point . I did ask if they could wash my bladder out but the urologist said it wasn't effective.

I have read of a few ladies with PMR suffering repeated uti infections.

I do believe there's a stress connection. I've noticed after a particularly stressful time I'll get a uti .

The dandelion tea is quite wonderful. I remember as a child being told I'd 'wet the bed ' when I picked dandelions. I order it from Amazon and it arrives the following day . Try and stick to an alkaline diet and if you feel an infection coming lemon believe it or not is great .

There have been many nights when I've sat on the floor in the shower with a full blown uti , drenched in sweat and tearful. It's horrible.

I hope you feel better soon and your energy levels increase. Of course long term antibiotics are going to contribute to tiredness.

Feel well soon and listen to lovely calming music and podcasts.

Daniella Laporte is a current favourite.

Do let us know how you are .

xx

[annie_marie in reply to Greensleeves]

Thank you. x

[PMRpro Ambassador]

Has your rheumy mentioned the possibility of using tocilizumab at some point? It has just been the subject of a clinical trial for use in GCA and the rumours are that it is now going for FDA approval because the results were good.

It isn't yet approved for GCA but is already in use in rheumatology for RA. I know of some patients who are on it for GCA/PMR, one has had her diagnosis changed to LORA so it would be allowed. A couple of others in the US have had funding provided by the company and special permission - it is very expensive! It is possible it could be approved as a special use in the UK.

It may be worth asking if you can be referred to a hospital with an active research group for some lateral thinking!

[annie_marie in reply to PMRpro]

Thank you PMRpro. I have just read the info on tocilizumab and if I can tolerate it neurologically, it certainly looks as though it would be worth trying. Thanks I will ask my rheumy next time I see him.

[Bittebitt]

Annie_marie: you mentioned sore eyes. Glaucoma eyedrops usually contain preservatives like benzalkone chloride, which is toxic to the surface of the eye. Many glaucoma eyesrops come in bottles or single use ampullaes. (Minims). The latter ones do not contain preservatives, and therefore they don't irritate and make ulcers on the eyes' surface.

[annie_marie]

Thank you bittebitt, All my eye drops are preservative free as I am so sensitive to any medication. I am a real problem to the doctors, when they take a look at my notes they give a big sigh.!! I am embarking on a very strict diet to try and "re-set" my body. Anything is worth a try. Thank you again for your support. Annie

[Doralouise77]

Oh dear Annie, you're having such an awful time. Who knew how brutal these diseases could be! I have no suggestions I'm sorry but will concur with the sweating, but mine has decreased as the dose went down. I found the fatigue level went down too as I tapered (to 10 but gave an extra 5 yesterday). I also have myopathy and a torn gluteal muscle compliments of Pred. As far as medications, there are others out there as others have said....research them and approach your rheumy about them.

Hang in there Annie, I know what you're going through as I suffer much the same. We just have to keep motoring on.

Good luck in staying the course.