New to all this and looking for some guidance from those with more experience

[scjh]

I'm a previously fit and healthy man of 58 and have gone from a sore knee, then a swollen calf less than a year ago, through a spell in A & E with chronic kidney failure, and blood pressure of 260 over 190(!), to a diagnosis of localised scleroderma (anti RNA polymerase antibodies positive) and accompanying Raynaud's.

I'm currently unsure whether the main intrusive symptoms come from the scleroderma or side effects from all the drugs I'm on.

Daily:

Ramipril 20mg

Amplodipine 10mg

Mycophenalte Mofetil 1.5g

Spironolactone 25mg

Bisoprolol Fumarate 2.5mg

Furosemide 20mg

Predisolone 2.5mg

I experience huge tiredness and a swimming feeling with my balance - not dizzy, but my balance seems off and I'm happiest lying down but know that won't do and I can't lie down when I'm out!

The main thrust of course is to keep my blood pressure down to give my kidneys a chance to improve, which they are a little - I've seen both my rheumatologist and a renal consultant (both of whom have experience with patients with scleroderma). Both tell me that 'fatigue' is very common with scleroderma. Though it's also listed as a side effect of many of the drugs I'm taking.

I'm wondering if anyone has experience of these and how they progress as treatment continues and your body gets accustomed to the medication? Or does the fatigue continue? If so what strategies can help?

Many thanks in advance

Stephen

[zenabb]

Sorry, it would be wrong to give an opinion about your drugs, but Raynaud's and Scleroderma is exhausting. I make efforts to over come it and live a life.

[wartsandall]

Hello Stephen....welcome to this site.... by the sound of things you have had a very rough ride....My understanding of kidney failure is that it is not a very pleasant disease to endure......I'm sure that you have been feeling really poorly and extremely fatigued....Scleroderma can also make you feel the same.......I have had personal experiences of the problems of scleroderma and I fully understand the everyday problems members of this site face............Please feel reassured that you are in the safe hands of experienced medical staff and that with your treatments you will gradually start feeling much better soon, especially when you body adjusts and responds to your medication.....Try to stay positive and don't be victim to this disease.....try your best to carry on as normal with all of your everyday activities and remember that you have lots of people around you to help.....you have your friends and family, your consultants, your GP, your scleroderma nurse specialists and the unlocked community to help and advise you... best wishes to you and please don't feel alone....take care x

[lifeforce]

Sorry for your diagnoses,I have felt your pain for 13 years now,although thank god I don't have kidney involvement. It has affected my lungs though. The only thing I see on your med list is the low prednisone of 2.mg., this may well be because of other problems you have, but I take 5 mg. everyday and started out with much higher,it does help with the fatigue. Definitely stay on an antidepressant,your mind will need it now and in the future. Good Luck!!

[graygirl1]

Hello Stephen. A very warm welcome to the forum. I am sure you will find a great deal of comfort and encouragement here.

You have a great deal going on with your health, you are bound to feel tired and unwell. My symptoms are mild in comparison but I can confirm that fatigue and wanting to go to sleep is very much to do with your illness and maybe some of your medications. Every sufferer of autoimmune disease experience all sorts of symptoms, some similar, some different and the same goes for the treatment.

Continue to monitor your medication and report your feelings to your doctors. It can sometimes take a while to fine tune the treatment for the many symptoms. The rheumatologists are marvellous so don't despair, you will soon be able to cope much better. It will take time as there are so many aspects to your illness.

Be sure to rest as much as you need to and please be kind to yourself and take good care. You are bound to get tired very easily so sleep when you need to and try not to overdo things. I hope you have lots of support from family and friends. Folks are very kind and patient but it's not easy for them to fully understand and it is not easy to explain. You could recommend the RSA website and this forum where much can be learnt.

I am sending you good wishes for a speedy improvement of your health and look forward to hearing how you're getting on so keep in touch. Keep nice and warm. Good luck!

Graygirl1

[AHM42]

Yes fatigue is certainly one of the major problems in scleroderma. Once your body gets used to the medication then things may change but you need to listen to your body and although you can fight fatigue up to a point there comes a time when just a short rest will help to put you back on your feet. One gets to live with the condition but at the same time try to live life to the full as much as you can. It varies from day to day and week to week so you have to go with the flow and put your faith in your rheumatologist and other health professionals and don't be afraid to ask for help when you need it. Good luck!

AHM

[Thelma]

There can be unexpected flair ups of this, that and the others; I've had ongoing complications pretty much non-stop since last October, but with a strong will, a rather regimented schedule of eating meals on time, intaking meds on time, resting during the day, retiring to bed early at night, practicing Yoga, Stretch and Muscle Toning a few days a week, a good support system of Family and Friends and a decent team of doctors, my own positive and fight-back attitude to this Scleroderma and Raynauds disease(s) with PAH, CHF, I manage rather well. Have had 2 surgicals over the last 6 weeks and still recovering. - You're taking your meds, you've very aware of your conditions and learning along the way - for knowledge is power and you'll be able to fight back better - then you will manage your conditions even better to enable you to be more functional. These conditions can weigh heavy sometimes on the emotions (I shedded a few tears this morning during my medical appt.) - and then with the understanding of my medical assistant and the love and understanding of a dear friend comforting me, I snapped back into having courage and confidence. I suggest that you continue to give yourself the best self-care as possible, accept only positive atmospheres around you and allow your support system to love, comfort and help you. We are a strong support group for one another out here on this website, I'm sure you will agree as you become more acquainted with the site. I am one of your cheerleaders in the background, cheering you on SCJH - best wishes and prayers for your comfort and recovery.

[Hidden]

Hello Stephen,

I have suffered from Systemic Sclerosis for some 22 years. The balance problems you speak of started happening to me just over a year ago only. I do not put it down to meds as I have been on these a lot longer than a year. I have lost feeling at the front of my feet and cannot stay balanced when leaning forward. I have to remember to lean hard on my heels before leaning forward. But there is also something going on in my head relating to balance. I also get the swimming feeling like yourself. I have looked on the web and it seems autoimmune illnesses can attack the ears but it is hard to prove without specialist equipment and even then test results can differ. Look up Vestibular Disease. Fatigue has stayed with me throughout and I find it hard to gain weight probably due to mal absorption as with systemic our digestion is badly affected. Take care and stay with the site. You will get lots of support and advise.

[scjh]

Thank you everyone for your wonderfully friendly and supportive welcome; it's much appreciated.

wartsandall - 'scleroderma nurse specialists' who are these and where do you get one? I see my rheumatologist and that's it so far.

lifeforce - I'm on that low dose of prednisolone to wean me off it. I was on 30mg a day and my reaction to that (swollen face so much I couldn't see etc!) was partly what triggered all this - apparently it happens quite often. I'm not on an anti-depressant - should I be? Years ago I tried them for a short while for another 'situation' and didn't find they worked for me.

romulus - thanks for picking up on the giddyness/balance question. I'll mention inner ear tests to my consultant next time. I identify with the setting your heels feeling you mention. I feel as though I am going to fall over quite often and that adds to the nausea and general wobbliness.

My GP is efficient but not cuddly as it were - when I told her my consultant had said I probably won't cycle again she said simply that it sounded as though he was being clear with me; not 'cuddly' as I say. When do you know when to change your GP? It would seem a lot of work to start again sort of from scratch.

As many of you mentioned it's normal to have good days and other days - support does help.

Thanks again everyone, and keep them coming!

Stephen

[Hidden]

Hello again Stephen,

I changed my GP last year as I did not feel very happy that my condition was being properly responded to, and no effort was being given to understand it . It is very simple to change surgery. I telephoned the surgery I wished to be registered with and asked if they were able to accept me. I filled in a short form handed this in to the new surgery, and the transfer was done without further ado. It really is this simple.

Wishing you all the best and good luck with your chosen surgery.

[wartsandall]

Hi Stephen,

There are several Scleroderma nurse specialist nurses that work along side rheumatology consultants at many of the specialist scleroderma treatment cemtre throughout the country......The Raynauds and Scleroderma Association (RSA) are a very good source and are able to give you the nurse specialists contact telephone numbers...... or you could try your Rheumatologists personal secretary,......... I'm sure they will have your nearest contact close at hand......also, if you contact the RSA they will give you the contact details of support groups in your local area.....good luck and I hope you find this helpful x

[newbe]

Hello there

So sorry you are having a tough time but fine tuning of your medication I am sure will help. Unfortunately you find yourself better some days than others. I asked to be referred to the royal free hospital in London via my gp and they were excellent, they liase with the rheumy consultants that you see at your local hospital.Do hope things will settle down for. Best wishes.

[scjh]

Thanks for the further support, and continuing helpful replies.

romulus - Thanks for the guidance about changing your GP and making it simpler than I was imagining. I don't have much choice near where I live so it might have to be another doctor in the same group practice and don't want that to be too awkward.

My heart did stop for a second when I read 'good luck with your chosen surgery.' as I didn't know I was booked in for surgery....!

wartsandall - So that's what they are; thank you. My consultant is in a very small unit at Amersham (I'm in Hertsfordshire) - I like him very much and he has several scleroderma patients though I don't think the unit is big enough for the nurse specialists but I will ask and also see what the larger specialist units can offer even at a distance as travelling isn't easy of course!

newbe - That's good news; I'm booked at the Royal Free for early October so if they can liase with my local consultant that would be excellent. They are a welcoming and helpful team at the Royal Free then? Do you think they might know about balance problems or would that be for my GP to help me with do you think?

[newbe]

Hi again Stephen. The royal free are very informative and welcoming they are one of the specialist rheumy units lead by professor Denton. They do a routine urine test, bmi and about 8 different blood tests to check for autoimmune antibodies and take a full medical history. If you have any documentation regarding your medical history it is a good idea to take that along too. I am not sure about your balance problems whether it is connected or not.I am sure you will get answers there. Good luck and let us know how you got on.