Muscle weakness

[Traceyh22]

Hi all. I'm new to this site and really wish I'd found it sooner!

I received a kidney from my mum 26 years ago and have enjoyed excellent health ever since. Unfortunately now I am experiencing muscle fatigue, which in my line of work ( I care for adults with severe learning difficulties) really isn't helpful!

I've gone through the whole conversation of " you're 44 and not as young as you used to be" but this has come on quite rapidly along with weak & sometimes painful finger joints/tendons. When I tried discussing my worries at Exeter hospital they became quite cagey, and kept going over how good my results are and how stable I have been. The only advice I was given was to reduce my working hours, which isn't feasible as I'm a single mum with bills to pay! Lol

I'm taking Prednisolone 5mg, Azathioprine 100mg.

Just wondered if anyone else out there has or is experiencing similar symptoms or has any advice on how to deal with it? I feel I need a plan of action for my future so I can deal with this properly without impacting on everyone around me.

Cheers xx

[bigkid]

I had a cadaver transplant 4 years ago and in the last 12 months I have lost a lot of muscle with constant fatigue and joint issues particularly in my calves and finger joints. I exercise regularly, although it is getting harder and harder, which includes weights especially for my legs but still the fatigue, weakness and constant cracking and crunching of my joints gets worse by the day. Renal response to this has been dismissive as you would expect, the focus is on the survival of the kidney everything else is secondary, the age card is used regularly as I am 61. I am of the opinion that the problem is due to the combination of drugs, in my case the regime is stricter than yours as I am on Prednisolone, Tacrolimus, Atorvastatin and Mycophenolate but I have a distinct feeling that it is actually the statin and steroids that are to blame. The problem we have is that the drugs are critical to our condition and change could bring about rejection, unfortunately we just have to try and live with the cards dealt. Good luck pursuing a solution but I think that you will be hard pressed to make any progress although lets know if you do... Regards Rob

[Methusala]

Have you checked out online what Prednisolone, a steroid, and Azathioprine are for and what their side effects are? I had a cadaver transplant 8 years ago aged 66 years and am doing very well according to my renal consultant. I take Mycrophenalate and Tacrolimus and was on steroids for a very short time after my transplant.

It is necessary to arm oneself with knowledge about these drugs and ask for alternatives if you feel the side effects are restricting the quality of you life. I hope all goes well and you are able to change your drugs to ones which suit you better. Don't give up and let us know again how things are going for you.

[therso]

You will know that long-term use of corticosteroids (prednisolone) is most definitely something to be avoided. You will also know that some kidney recipients are able to stop taking them post-transplant but others must continue with them or run the real risk of losing their graft as bigkid states in his reply.

I received my kidney from my wife more than 4 years ago and it has been a very bumpy ride since. However, from my own experience, observation, and discussion with fellow transplantees, it is clear that the majority of patients do not question or challenge the decisions and actions of their renal consultant but adopt the, very understandable, attitude of he/she is the expert and therefore knows what is best for me. Yes, they are subject matter experts in their field but to date I have yet to meet a Renal Health Care Assistant, Renal Nurse, Renal Consultant or any Renal Professional who has actually had renal disease, failure, dialysis, transplant or post-transplant conditions, complications etc.. My point being that for all the excellent work and care carried out by these medical professionals they have no personal experience of the many, and varied, effects a transplant recipient might suffer/have post-operation. Many of those side-effects/conditions are difficult to describe or explain to a non-sufferer, even the most capable and experienced.

Post-transplant, I developed hospital-acquired pneumonitis that very nearly did for me. Add BK Virus to that plus 19kg weight loss and then foot drop. So, a few weeks after the excitement of getting my new kidney I was back on the renal ward for a further 8 weeks. Then I had to learn to walk again, cope with residual lung scarring and rebuilding my health. Follow all of that with another long fight against BK etc., etc. and I quickly came to ask the question, 'Was it worth it?'

So, I determined to learn. To understand. To be able to ask pertinent questions. To be able to say to my consultants, Hey! This is my body. This is my life. You will listen to me and you will not tell me I am imagining this or that or say that it is normal and nothing to worry about.

Prednisolone is bloody horrible but necessary for graft survival. The combined effects of all the other meds most of which include depression, fatigue, mental and emotional issues aren't pleasant and can be, and are, very debilitating. For some reason we are expected to put up with that and I have always got the feeling that I should simply be grateful that I'm still here.

At this point I think it better to get back to the original question of fatigue and joint pain.

It is a fact that all renal dialysis patients develop a condition called Secondary Hyperparathyroidism(HPT). It is better you look it up as this condition is given little attention other than prescribing meds to control blood calcium levels etc. Most kidney transplantees' HPT resolves post-transplant as the Parathyroid Glands (4 pin-head glands that sit in front of the thyroids in the throat stabilise and perform normally. However, in a very small percentage of patients (and very rarely) the glands continue to produce Parathyroid Hormone(PTH) despite any medication to control calcium levels etc.. This is called Tertiary HPT and is cured by surgical removal of the affected glands less a tiny portion of one gland that remains in the body. I have Tertiary HPT. I have researched and studied this condition(Primary[slightly different], Secondary, and Tertiary). You can probably guess what some of the main symptoms are by now: joint pain, bone pain, depression, fatigue and, most importantly, osteoporosis.

Ask for your levels of PTH and Adjusted Calcium. Are they high? Have they been high for a long time. Ask about bone scans. Read about the condition. Don't allow them to accuse you of 'googling' simply to see if you have the symptoms etc. This is real and, if not treated, will get worse. Are you on Patient View? If not, why not? Ask at your renal clinic.

Be aware though that, as with all things health in the NHS, there exist processes, procedures, standards, and criteria. In other words, do you fit the picture? For me I have narrowed it down to 3 reasons as to why I might be refused surgery for my HPT and you will be familiar with these as they have been applied to many sick and diseased people under NHS care. They are: Age. Life Expectancy. Cost. Yep, some faceless person/s have sat down and worked out whether those factors apply to me and will there be a good Return on Investment.

Finally, if, and HPT is just one thing that may be the cause of your symptoms, you think that PTH might have something to do with your symptoms, you must demand investigation. Do not be browbeaten. This is your life. Fight for it! Good luck.

[Miss-A-V-P]

Firstly a huge congratulations on your long and healthy transplant. I'm not there yet. I'm at 20 years.. I would recommend you ask your hospital for a bone density scan and get them to refer you to specialists to diagnose the reason behind your fatigue.

[Hidden]

Hi, are you taking statins ? The cholesterol drugs can cause awful side effects. Not heard of anyone just on Azathioprine in a long long time. I only knew one person that just took that. I took it along with Cy A until about 2010 and it didn't appear to have any side effects. Maybe affects the skin a bit. Kd.

[Traceyh22]

Hi, thanks to everyone for your replies and advice.

I thought it was about time I updated you with my decision concerning my medication and side effects.

After finally seeing the renal doctor at Exeter ( I'm only up there twice a year) we agreed that the risks were too high for me to attempt switching meds, he also outlined the possibility that the damage done may be permanent and the side effects caused by alternative meds may not be any easier to live with :0(

I am booked for a bone density scan among other mot tests again! Statins were discussed yet again and my answer is still negative, no matter how they dress them up as wonder drugs, I've got enough to cope with, without adding to it!

Work have been the most supportive, allowing me to switch to nights which are far less physically demanding and as my sleep pattern is erratic at best (another nod to pred) this actually works in my favour.

So all in all there are more positives than negatives :0) my quality of life has improved over quite a short period of time, which I am extremely happy with. Long may it last!

Please keep us updated on how you all are.

Wishing you all the best of luck.

Xx

[Dunke57]

Hi Tracey,

I'm new to this forum, and like you wish I had found it sooner! I moved to Totnes from Oxfordshire with my partner 3 years ago. I'm 58 and had a transplant 20 years ago and l'm also on Azathioprine 100mg. I am under the RD&E for renal care, and have to say I'm not impressed. I've been complaining of muscle and joint pain and really debilitating muscle weakness but I keep getting fobbed off. I've asked to change from Azathioprine but my consultant Dr Bingham does not seem keen to change. My renal function is about 21% but feel too tired to hold down a job. Have you experienced any thyroid problems? I have nodules on my thyroid which they don't seem interested in investigating. Apparently standard NHS tests on the thyroid aren't very sophisticated so I've decided to have a private blood test as in renal patients if you're thyroid or adrenal glands are not working efficiently it can make you feel tired and ill. NHS tests just show my thyroid as being slightly out , but I'm convinced that this is effecting my feeling of well being.

Kind regards

Steve

[Traceyh22]

Hi Dunke57

Congratulations on reaching 20yrs!

Sadly the response you've received is similar across the board & not just transplantation. The side effects seem to be glossed over or in my case put down to my age. I did have a good chat on my last visit and it seemed to have the same negative answer as yours did. The weakness & pain experienced may be due to permanent damage, changing meds would just give us a whole new bag of side effects to deal with & at the end of the day the risk of rejection is seen as too great. I'm sorry to hear that yours are more severe

I see myself as damned lucky to have this level of good health and the ability to still work.

I've had my thyroid checked recently but not in connection with fatigue etc. I'm giggling as I type this. At 5ft 1inch and 9 1/2 stone they decided I was overweight and wanted to disprove any medical reason.

My sister suffers from thyroid issues and agrees with you, even a slight change in your thyroid can affect you day to day. Good luck with your test and let us know when you get the results.

Regards

Tracey

[smashandgrab]

It could be the prednisolone as steroids can cause this and I doubt it is your age.