Scleroderma & Raynaud's UK (SRUK)
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Just diagnosed with scleraderma

I am a 58 year old female who was diagnosed in November 2017

I was given 6 tablets a day to take . Myfenax to surpress my inure system ,, viagra for my blood and omeprazole for reflux . I had to stop taking the myfenex because I felt it was making me worse , the reflux attacks I have especially at night are horrendous, I was given another drug to stop the acid rising in my osaphagus Ranitidide but they don't seem to help at all . I have been off work for 3 weeks and carnt do anything as I am just lethargic all the time and out of breath and don't sleep . I have worked in my job for 24 years and just carnt see me going back to work

My questions are can anyone help with the reflux due to the tablets not working ?

Is scleroderma a disability ?

I have been told that I may live a normal life , but at the moment I just carnt see that happening

Thank you

15 Replies
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Have you discussed stopping the medication you stopped with your doctor before you stopped it? That seems to be the fundamental one you’ve stopped and not replaced with an alternative. I’d urge you to talk to your doctor about this if you haven’t already.

Reflux can be managed: smaller meal earlier in the evening (turn lunch into the main meal); elevate the head end of your bed; antacids like milk of magnesia can be used; a glass of water by your bed to sip if you wake in the night with acid; etc it’s about changing your habits.

As to if scleroderma is a disability it depends on how it is affecting you and what context you mean by disability (legislation re. Rights at work or for benefits are different). Don’t lose heart just yet, once you sort your medication for the underlying disease (what you’ve currently stopped and not replaced) and are through the first 5 years after diagnosis (where characteristically scleroderma settles down) you might find you’ve adapted and cope quite well. Stick with it and talk to your doctor ASAP about what you’ve stopped

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Thank you so much for your advice .i am seeing my Dr on Thursday and I have a list , hopefully to change the medication ..

I have lost 2 stone in the last 3 months cause I just don't have any appetite something else I will be discussing with the dr .

Your reply is much appreciated Bear

Thank you

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The dr told me to stop taking myfenax on the 14th Dec they should have called me back on Monday 18th to give me further instructions but no one called me , I called the dr on the Tuesday and was told she was off until the 2nd Jan , . Will ne seeing them on the 4th

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Hello there - not so long ago I was in exactly the same situation, wondering what had happened and how on earth I was going to cope. I had never heard of half the problems I was having to deal with! Prescribed a handful of tablets every day and no energy to even think about it. I spent days just lying on the sofa unable to do anything. Two years down the line and I'm actually beginning to feel more like my old self, albeit with limitations . . . so here's how.

Reflux - horrid, horrid, horrid. I use two pillows at least and make sure I don't eat late - have main meal in the middle of the day/early evening. Snacks only in the evening - find out what works for you, sometimes milky things, chocolate, alcohol can trigger worse attacks. I have learnt the hard way to listen to my body. Stop eating whenever your body tells you to. You may find you need much smaller meals to start with. I currently take Lansoprozol - 1 before breakfast and 1 before bed but if I wake in the night feeling symptoms of reflux coming have been told to take another asap. I then quite often sit up and read for half hour of so, as being upright seems to help.

Lethargy - debilitating when you have probably been busy all your life. I have managed to keep my job, in fact it helps keeps me going. My colleagues have been very supportive and when I cant do things such as reach stuff or things needing fine motor skills have been there to help, but I try to make up for it in other ways. Take time to relax - call on help - people are happy to help. Reduce what you do and find ways round it. Its hard when you have probably been self reliant for so long, but now its your time to think about what you can do and personally I feel as if my energy is beginning to come back a little, maybe I have just adapted?

Raynauds - I also take Sildenifil (viagra) and it does help with the Raynauds but this is the symptom that if probably the most obvious to others. I wear gloves routinely sometimes inside as well as outside. I have just bought a new coat from a skiwear range which is toasty warm. I always wear thermals under everything and again listen to your body. Realise when you are stressed and what causes it, learn to relax your muscles.

Generally - listen to your body, slow down and accept what you are going through is tough. I tried applying for PIP but they didn't really want to know. This is a great forum to sound off too. I have had to learn to cope with the hand I've been dealt and you will to, it will take a while but its not the end, I promise.

Sorry this is such a long post, hope you've managed to wade your way through it . . .

Finally - be positive - when ever I feel down I remind myself that I'm sure there are people who are suffering with this a lot worse than I am, and if I can't do something one way then there must be another way to do it that I can.

Stay positive xxx

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Hi Galama

Firstly don't apologise for your long post . It all makes perfect sense . I think coming to terms with what's happening to my body is the hardest of all . I have always been active and not being able to do everyday tasks is hard to accept . Like you say , I will have to slow down and accept what I'm going through cause your right there are other people out there who are probably worse than me .

Thank you so much it really has helped

X

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hi Galama, sorry you didn't get PIP but, did you re apply? They can do that on first applications in the hope that you give up and don't reapply. I know, that is what they did to me ....I wouldn't take no for an answer...after being in hospital many times with all that ails me from this dreadful systemic sclerosis...joints swollen, lungs badly damaged, exhausted all the time...etc. etc. I re-applied and finally took it to a tribunal which I won with the doctor on the panel amazed at why I had been refused benefits with all that was wrong with me...so, don't give up on that one please!.

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Hi

Reflux: I suffer badly with this too. I have found it better to take my reflux tablet (I am on emozul 40mg once a day) about 4pm as they are then working for me best at night when l am lying down. I have 2 pillows. If I feel an attack coming on I often find a small glass of milk sorts it out. This usually happens when the emozul is wearing off in the afternoon. I eat small meals. Although my doctor tells me that anything I eat will be less acid than the acid in my stomach and shouldn't make a difference I do find that fruit juices/ wine/oranges are not good some of the time, but not always! It is a case of trial and error. Good luck.

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Hi Winifred

I thank you for your reply

I will try what you say and hope it works for me . I have to sleep sat up with 3 pillows if I lay down I can feel the reflux rising

Thank you again Winifred

Diane x

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I'll keep my fingers crossed for you!

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Hi there. I too suffer from bad reflux. Although I have been prescribed lansoprazol 30mg twice a day, I also take 1nexium control tablet before I go to bed. It seems to have helped me in the past 2 wks so maybe give it a try. As for the tiredness I'm afraid I have no answere to that, I was diagnosed June 2016 and am still trying to overcome that myself. Unfortunately I had to quit the job I loved because of this condition. Hope this helps if only for the reflux. Happy new year to you x

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Hi Joanne

Thanks for taking the time to reply .

Sorry hear you had to give up your job . I am currently on the sick at work and it's something I have never done in the 24 years I have worked there . I work in a bank and they will support and help me adapt once I return to work . I would be interested to know what your line of work was

Happy new year to you too

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Briansirrom,

I was diagnosed in '88, they told me I would live comfortably at least 10 years, and I kinda did. But the desease damaged my heart, lungs, kidneys, etc. So I was deemed disabled then.

I hated it, I got some of my energy back, and was able to do most anything but in spurts. In the last 5 years my health has slowly declined. Now I do what I can when I can, or nothing. As for the acid reflux, the omeprazole has done me well, I have never taken the other meds you talk of. I take captopril for blood pressure, its the only thing at the time that helped stay the scleroderma, I'm taking metoprolol for the heart, diltiazem, heart, furosemide for fluid retention, loratadine for allergies, levothyroxin for thyroid, and of course Imodium for the usual.

It took me a year to get back to a normal, but you sound like you are doing as I am. I have no energy, I feel weak most days, the cold hits me too hard, the heat too. I am supposed to wear long sleeve shirts, hats, scarfs, gloves, but I cannot stand all these things on me, I wear short sleeves in winter, this year I'm cold and wearing long sleeve and its hard getting used to, my skin is sensitive, don't like anything touching me. Don't know what you will do, but if I get up with a bit of energy I use it, I was always on the go and after 30 years I still cannot stand doing nothing!! So go with what ever your feeling each day, my doctors used to tell me a little bit of dirt never hurt anyone, this said when I was complaining about not being able to clean house. Sorry for rattling on, haven't talked about it in a long time. I want to know what the Viagra does for you and the myfenax, no one has told me about that. And yes talk to your doctor about any meds you quit taking.

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Hi livingpain

Reading you blog makes me feel quite sad for you , 30 years is along time and no you haven't "rattled on " . It's good to know your not alone and there are other people out there in the same boat

The viagra is for the raynauds and the myfenax was for suppressing my immune system .

Great to chat

X

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Thank you E1138610,

There are very few of us with this in this community, actually only one other I believe. I don't talk about it much, most think there is nothing wrong with me. I had never heard Viagra being used for raynauds, my docs don't tell me much, but at the moment they are more concerned with my heart. But thanks for your reply!

good chat back

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I'm finding it quite hard to adjust having been very active,climbing mountains and running races...it is a big adjustment but so many on these sites give amazing encouragement and practice advice ,so stay in touch!

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