Remission nice while it lasted!
Posted 31 March 2009 - 07:02 AM
Posted 31 March 2009 - 11:49 AM
I'm sorry to hear that. I was so hoping that things would continue improving for you. Perhaps the methotrexate will help?
Posted 31 March 2009 - 01:24 PM
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!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 31 March 2009 - 03:45 PM
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. )
Warm hugs and always best wishes,
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 31 March 2009 - 09:06 PM
Posted 01 April 2009 - 02:47 AM
Thinking of you
Posted 01 April 2009 - 06:17 AM
Posted 01 April 2009 - 06:20 AM
Posted 02 April 2009 - 11:34 AM
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.
Posted 02 April 2009 - 03:24 PM
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!
Posted 02 April 2009 - 08:19 PM
Posted 03 April 2009 - 05:40 AM
Good luck and warm hugs,
Posted 03 April 2009 - 11:37 AM
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?
Posted 03 April 2009 - 03:42 PM
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.
Posted 04 April 2009 - 06:57 AM
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.
Posted 04 April 2009 - 10:32 AM
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.
Posted 06 April 2009 - 10:32 AM
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.
Posted 07 April 2009 - 06:47 AM
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!