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Did you know that exercise increases inflammation in systemic sclerosis?


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Remission nice while it lasted!


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#1 lizzie

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Posted 31 March 2009 - 07:02 AM

Just three short weeks ago I posted that the doctors said that my skin score had improved and were holding back on the immunosuppression. Typically, a week later the old familiar itching burning started and my skin has noticeably started tightening again. As a result the doctor has decided that I should give Methotrexate a try (I can no longer take Cellcept). I'm really not feeling very optimistic re the efficacy of the Methotrexate, and am just wondering if any of you have had a good result with it?

Lizzie

#2 Snowbird

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Posted 31 March 2009 - 11:49 AM

Hi Lizzie

I'm sorry to hear that. I was so hoping that things would continue improving for you. Perhaps the methotrexate will help?
Sending good wishes your way!

#3 Amanda Thorpe

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Posted 31 March 2009 - 01:24 PM

Hello Lizzie

I'm glad you've recovered from you Cellcept induced ordeal and sorry the remission has ended.

I don't know about methotrexate but do hope it helps you with no bad effects. Lots here are or have been on it so you'll soon get lot of useful replies!

Take care.

Amanda
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#4 Jeannie McClelland

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Posted 31 March 2009 - 03:45 PM

Ah, Lizzie, I'm sorry to hear that. Methotrexate has given positive results in clinical trials - see here. I know it's one of the commonly prescribed treatments, judging by the number of Forum postings I've seen mentioning it -- I'd take that as positive evidence -- if it didn't have a reasonable success rate, would they still be using it?

Aren't you in the final stages of getting a graduate degree? Do you think stress and over-work could possibly have contributed? (You can always tell a mum, we always start nagging. :rolleyes: )

Warm hugs and always best wishes,
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#5 lizzie

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Posted 31 March 2009 - 09:06 PM

I'm sure you are right re the stress being a contributary factor- there has been a bit too much life recently. I also have psoriasis and that has gone into overdrive too- a sure sign of stress. I have in fact finished my Phd so the stress is off re that , but husband was recently diagnosed with cancer and is finally having his surgery this weekend (was meant to have been two weeks ago but got delayed).

Lizzie

#6 Buttons

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Posted 01 April 2009 - 02:47 AM

Lizzie I'm sorry to hear that the tightening is progressing again. Stress will certainly be exacerbating it but some stress is not easy to get rid of. Try to have some time for yourself & relax a little ( I know easier said than done). I hope all goes well with husbands surgery.
Thinking of you

Jensue

#7 ashu

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Posted 01 April 2009 - 06:17 AM

Hello. I was very happy to hear some time back one at least from sclero family is going for remission. But bad luck,.dont worry things will get better soon. Methotrexate is immunosuppresant that prevents progression of the disease more over that prevents contractures of the joints. It is a good drug for initial stages.

m/o ashu
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#8 Peggy

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Posted 01 April 2009 - 06:20 AM

Why aren't you able to continue with the Cellcept? That's what I'm currently on and my doctor had considered putting me on the methotrexate but has decided to hold of on that for now. From what I've seen on the forums the injections of methotrexate seems to be better than the oral. I also seem to remember that they time when to do the injections so as to have days to deal with it. I also think they take something with the methotrexate so as not to have the nausea but I'm not sure what it is.

Peggy

#9 lizzie

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Posted 02 April 2009 - 11:34 AM

Hi Peggy, I had to stop the Cellcept because I had a GI bleed which the gastro thought was caused by the Cellcept (I was hospitalised for nearly 2 weeks).
It was a real blow as I had only been on it 4 months and it seemed to be just begining to have an effect. I saw the rheumatology nurse specialist yesterday for counseling re the Methotrexate. I am going to have the injections and have also been prescribed folic acid to prevent nausea. Am now feling slightly more positive. If Methotrexate doesn't do anything , the next step is Cytoxan.

Lizzie

#10 ozzy69

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Posted 02 April 2009 - 03:24 PM

Hi Lizzie,

I am sorry to hear you are having so many problems. I have been on Methotrexate for six weeks now. I started on a low dose of 10mg a week and now I am up to 15mg. I have not seen any skin changes yet. I think it takes months. I do have more nausea even with the folic acid. I have also had more joint pain and pain in my lower ribs area. My primary doctor says it is muscle pain, but I am not sure I agree with him. I feel more run down since I have been on the methotrexate. I am hoping it will get better soon. I have read that lots of people have had good results from the methotrexate.

Hope it helps you!
Hugs,
Nina Lynn

#11 lizzie

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Posted 02 April 2009 - 08:19 PM

Thanks for sharing your experience Nina Lynn. The plan is for me to have a fairly rapid increase in dose from 10mg a week to 25mg a week over the space of a month, so am a bit worried abut feeling off it as need to function effectively at work. I hope that you start to feel better and see some positive results soon.

Lizze

#12 Peggy

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Posted 03 April 2009 - 05:40 AM

I so hope the methotrexate will work. I'm glad to see you're doing the injection form as from what I've seen posted this seems to be better than the oral. I did the cytoxan too and was only able to do it for 4 or 5 months as I developed interstital cystitis of the bladder/kidneys. That's when I went on the Cellcept. I didn't know that there were those types of side effects that you had from it so I'll have to keep my eyes open.

Good luck and warm hugs,

Peggy

#13 debonair susie

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Posted 03 April 2009 - 11:37 AM

Dear Lizzie,

The Psoriasis is exacerbated by stress also, as you know. With your husband's surgery, your stress level is in overdrive, so it stands to reason you have the itching going on.

Is there any OTC cortisone cream you might be able to use to alleviate the itching?

I also have Psoriasis and when I had an itching frenzy going on, I went to the ER and they gave me a shot of Epinepherine... This calmed things down for me. Here in the states, we have an oatmeal based line of products which work well also, to help on a daily basis.

I really empathize with you on this front, Lizzie. Number one, my husband finished radiation treatments in January and then problems with my mother's breathing, etc.. My Psoriasis has been giving me fits too. I had Strep in January and it then triggered Guttate Psoriasis. I'm on my third round of a different kind of antibiotic to try and eradicate the strep.

I will hold you and your husband in my thoughts as he undergoes cancer surgery. Please let us know how each of you are doing when you feel up to it?
Special Hugs,

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#14 Purr

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Posted 03 April 2009 - 03:42 PM

Lizzie,
I have been taking methotrexate (MTX) injections for over a year. I started out taking pills, but the injection has better results according to my Rheumatolagist. She's right. I noticed improvement very quickly. I also take a folic acid pill every day to help with any stomach discomfort. That does a good job too. I can get down on the floor to retrieve cat toys and stand back up by myself! I am more steady on my feet and can also reach up to get into cabinets with no problem. I used to have to use a stool to stand on. Hanging clothes isn't a problem any more either. You will probably have some side effects, but they go away in a short time, at least mine did.

Anyway, I have had excellent results with MTX. I hope you do to.

Christyh
Love makes the world go around!

#15 lizzie

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Posted 04 April 2009 - 06:57 AM

Debonair Susie: thanks for the suggestions re the itching. On the scale of things my psoriasis is fairly mild with the plaques very spread out but they are itching like mad, in addition I have also got the itching /burning of the sclero going on as well. I find that the greasy base that is applied before the psoriasis ointment is pretty good at stopping itching if I use it by itself to keep the plaques moisturised between applications of the ointment. Strangely though applying dermatological standard moisturiser to the areas of skin that are itching due to sclero actually makes it worse!

Also thanks for the empathy re the husband. The surgeon rang me earlier to say that the opertion had gone extremely well, which was a great relief. The nurse rang me about an hour ago to say my husband was back in his room and then put him on the phone. It was good to speak to him -- even though he didn't make much sense and sounded like he had had a few beers too many! I occupied myself by cleaning (a rare event) while waiting for the news, so now also have a nice clean house.

Purr: it really cheered me to hear that methotrexate is having a good effect for you and that the side effects eventually went away -- makes me feel less apprehensive. They were going to give me pills until I said I would rather have the injection as I had read it was more effective (although that was in Rheumatoid Arthritis) and that people experienced less nausea. They then said that it was better as far as the nausea was concerned and also got less problems with mouth ulcers and sore mouth. If that is the case I wonder why do they not tell people that and give them a choice of tablets or injection? I expect as with most things its down to cost.

Lizzie

#16 debonair susie

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Posted 04 April 2009 - 10:32 AM

Oh Lizzie, thank you so much for letting us know about your hubby's surgery. You both have been heavy on my mind and I'm sure you are relieved that his surgery is over.

I tend to handle stressful situations the same as you: through constructive ways I.e. cleaning, baking cooking, yardwork -- anything that keeps me occupied! At any rate, I am glad for you and hope that your hubby recuperates well and that you can relax a bit more.

I can see how the moisturizer would aggravate the Sclero areas, for sure. Because of the Sclero, it seems to really agitate the nerve endings, in combination to the Psoriasis, because they really ARE arch enemies!

I have another thought, but I'll send you a PM.

Lizzie, would you please let us know how your husband is doing down the road? I'll continue to keep you both close in thought.

My best to your husband in his recovery.
Special Hugs,

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#17 ozzy69

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Posted 06 April 2009 - 10:32 AM

Hi Lizzie,

I was checking with you to see if you started the Methotrexate and if so how you were feeling. I hope everything is good with your husband.

Hugs,
Nina Lynn

#18 lizzie

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Posted 07 April 2009 - 06:47 AM

Hi Nina Lynn,

I haven't started the methotrexate yet. It will be another week or two. The system is that the hospital set up the syringe delivery service with the company that supplies them who then contact me. They also arrange for a nurse to come and show me how to inject (although I already know how), deliver my decontamination kit to be used in case of spillage (don't like the sound of that!) and provide the antiseptic swabs and sharps box for used needles along with the months supply of methotrexate. Apparently takes about 2 weeks, but as it is a public holiday weekend coming up will take a bit longer. This in fact suits me fine as don't want to risk feeling unwell until my husband is recovered . He got out of hospital yesterday and is doing very well, and is not being too pathetic!

Lizzie