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Rare form of morphea and Methotrexate novice


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#1 Amanda Thorpe

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Posted 31 May 2009 - 02:59 AM

Hello All

Well I saw a new rheumatologist (new to me) Thursday as well as Prof rheumatologist. I can't remember Mrs rheumatologist's name but she was superb!

Anyway the THING! on my leg is most likely bullous morphea and I need to get a photo of it on this site as it's really quite gross now I must say. Prof rheumatologist said that if the methotrexate doesn't bring improvement in 6 weeks see a dermatologist so we shall see.

I left with lots of new medicines though and got quite excited! I have now become a fully fledged member of the gastro club because I have reflux or the feeling that food is stuck every time I eat now. I was surprised by how suddenly this came on. One day it was full on and 3 weeks later it was no better. I now have omaprazol and metaclopramide to take, the former one a day the latter 3 times a day before food and if I make the mistake of eating without taking it the food hangs around like an uninvited guest.

My blood pressure is now a concern, in the past it was always 117/70 whether I gained weight or exercised or not. Recently it went up to 130/90 and at last check was 150/90 so I now have a blood pressure medication to take once a day. Thankfully at last blood count my creatinine was low although higher than the one 6 weeks before. I now have to have my blood presure checked every week, renal crisis being the unspoken concern.

Now onto the methotrexate, Cellcept (mycophenolate mofetil or MMF) absolutely without question caused me "crushing" type headaches so we've parted company. I was a bit irked about this because because the Mr rheumatologist I saw at my last 2 visits said headache was not a side effect of MMF but as soon as I mentioned it to Prof rheumatologist he confirmed it was!

Anyway when do I take the methotrexate and then the folic acid? I know it's supposed to be a 2 to 3 day gap and you take everything the same day each week the question is what day? I know some have had side effects so take it on a day they know they can rest. What could the side effects be like and how long could they last? I realise everyone's different it's just helpful to know, had I known headache could be caused by the MMF I would not have persevered with it and the headaches for a year let me tell you!

Well I think I more than made up for the last visit to Mr rheumatologist which was quite frankly boring! Incidentally I don't intend to see Mr rheumatologist again as I don't think he took my condition seriously enough not paying any particular attention to rising blood pressure and dismissing the headaches. In fact he never checked my blood pressure, listened to my heart/breathing or skin score at the last 2 appointments and more fool me for not really engaging in the last appointment with him and allowing this to go on for two appointments. If I end up before him again I will have to politely decline his help and insist on seeing either Mrs rheumatologist of Prof rheumatologist and believe me I will be my own advocate.

That's all folks!
Amanda Thorpe
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#2 jefa

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Posted 31 May 2009 - 06:30 AM

Hi, Amanda.

Just wondering about your clinic setup. In my rheumatology clinic, there are two teams of rheumatologists that meet on different days, so you will see one of the same team unless you get shifted to the other team. However, everybody who comes in gets weighed and has blood pressure taken on each visit as soon as you log in at the desk.

My first rheumatologist seemed to be zeroed in on rheumatoid arthritis only and knew very little about sclero, so I got transferred to the other team where they know a bit more about it, even though they are not specialists. Any member of either team is light years ahead of the rheumatology clinic I attended at the old hospital (before we moved house).

When I first came to the present clinic, I had to attend a day in the day ward getting passed around to various people for tests and talks, including an occupational therapist, physical therapist and a rheumatology liason sister who gave me her card in case I ever had any difficulty anywhere along the line. They have a computer there you can access to get printouts of blood tests, etc. if you want them.

I still go in with bits of paper each time with my questions.
Warm wishes,
Jefa

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#3 lizzie

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Posted 31 May 2009 - 12:10 PM

Hi Amanda, Am looking forward to seeing a photo of your monstrous morphea :) . re the Methotrexate: I had to stop taking Cellcept earlier this year because it caused an oesophageal haematoma. I had a few weeks without any immunosupression to see how things went, but was getting some skin progression, so have now started on Methotrexate by self-injection a fortnight ago. I take mine on a Sunday (just injected myself this evening) and have been told to take the folic acid the following day (Monday). I experienced little in the way of side effects after my first dose last week- just a bit tired and slight bowel looseness- although was only 7.5 mg. I increase the dose by 2.5 mg every fortnight until on 25mg (I think). I'm In the rheumatology ward for a few days next week so hopefully will clarify the situation then. Welcome to the gastro club. I am prescribed pantoprazole and metoclopramide, However, although the reflux is a constant presence, I find the stuck food sensation comes and goes and I can be fine for weeks at a time before I get back to the coughing and spluttering and lump in the throat. So most of the time I don't need the metoclopramide. Still haven't figured out why my swallowing varies from bad to normal.

Lizzie

#4 Amanda Thorpe

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Posted 31 May 2009 - 11:52 PM

Hello Lizzie

The morphea thing is totally monstrous and it's getting bigger! It's obviously on a take over mission, first my leg then the universe! Why am I always so dramatic?

Anyway you're right about the gastro thing, I had it on and off for a few months but not it's just all day everyday. Weird that symptoms come and go as they lull you into a false sense of security and then BANG! they're back. See Dramatic.

Why injections and not tablet methotrexate? I hope it ain't cause of nausea, I hate feeling sick or being sick particulalry as I have to puke in the sink as I'm not flexible enough to kneel on the floor to use the toilet like most self respecting vomiters (yes it's a made up word).

Incidentally my methotrexate encounter will be delayed for a week as I have just had to start a course of antibiotics for a UTI. :angry: Oh well!

Take care.
Amanda Thorpe
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#5 lizzie

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Posted 01 June 2009 - 01:33 AM

Hi again Amanda. The resaon I chose to have injection is that there is supposed to be less chance of nausea (I've felt fine - although only on a mini dose at the moment), but also because of the GI problems experienced with the Cellcept. There is also some evidence that Methotrexate injection is more effective than tablets for people with rheumatoid arthritis - but no evidence re its effectiveness in scleroderma. Is probably a bit more hassle than the tablets - you have to wait in for delivery every 2 months and need letter for customs if you travel abroad, but the injection itself is simple and painless. On the plus side you do get a box of lovely purple rubber gloves, a supply of plastic aprons ( haven't figured out why!) and a chemical spillage kit. I wasn't offered a choice but just asked if I could have the injection and the doctor said yes. Probably worth considering if you do find you suffer nausea.

I had my injection yesterday evening and feel OK today - apart from the fact that I am stuck in my office in front of the computer instead of being outside soaking up all that lovely vitamin D.

Lizzie

#6 lizzie

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Posted 01 June 2009 - 01:42 AM

Hi yet again Amanda, Forgot to reply re the kneeling on the floor/ nausea situation. I always use a bucket when I have got the pukes, soooo much more comfortable and convenient. Can vomit in the comfort of your bed, vomit while watching TV, etc. No nasty cold tiled floors for me! It is simple to rinse out/ empty/disinfect when you are done puking. What a lovely subject!

Lizzie

#7 Buttons

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Posted 01 June 2009 - 02:44 AM

I hope you don't mind me chipping in to what Lizzie said about the swallowing issues but I am exactly the same, it seems to come & go but there are certain foods which seem to trigger it off every time for me. I do hate that feeling of a big lump in my throat or upper chest & that gets worse after drinking a cup of tea. My rheumatologist has just said its nothing to worry about but I do find it quite frightening at times. I take omperazole for the reflux.
Jensue

#8 Amanda Thorpe

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Posted 01 June 2009 - 10:03 AM

Lizzie I like your way of thinking! Puke in comfort, can't beat it.

Jensue I'm now taking the same reflux medication as yourself. I hoping it will come and go so I can enjoy not having the something stuck feeling!
Amanda Thorpe
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#9 gilltm

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Posted 03 June 2009 - 11:43 AM

Hello Amanda,

Gill H here!

Regarding gastro problems, my consultant diagnosed Blind Loop Syndrome, often associated with diffuse scleroderma (DCSS), and prescribed an antibiotic, Ciprofloxacin, to be taken 2 per day for 2 weeks then a 2 week gap.

The results were very good for a while; I now still take Cipro for 2 weeks, have a few days break and then am trying different antibiotics to see which are effective. At the moment, it's Tricycline, which seems to be working.

Sorry to hear the Morphea is worse!

#10 Amanda Thorpe

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Posted 04 June 2009 - 12:42 AM

Hello Gill

Welcome to the forum and thanks for your post!

I haven't heard of blind loop syndrome, what does it involve and what are the symptoms?

Yes the morphea THING! on my leg gets bigger everyday which is not good but what can you do? I hope to be able to start the methotrexate next week, on antibiotics this week so had to delay the start of treatment. I am hoping the methotrexate with deal with the THING! if it doesn't I am going to have to start charging it rent!

Take care and look forward to hearing from you.
Amanda Thorpe
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#11 gilltm

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Posted 04 June 2009 - 09:00 AM

Hello Amanda,

Blind Loop Syndrome, as I understand it, is where the passage of food through the intestine is very slow because of the scleroderma. Bacteria form and cause bloating, wind, pain, indigestion, heartburn, lump in throat feeling, nausea, etc

The name of the second antibiotic is Tetracycline not Tricycline - don't know where that one came from - a senior moment!!

Hope the methrotrexate works.

Take care.

#12 Peggy

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Posted 04 June 2009 - 09:23 AM

I just wanted to chime in on the methotrexate. I also take Cellcept but my rheumatologist has added the methotrexate at my last appointment. I have had 2 weeks of doseage. I too wanted the injection form to avoid the possibility of nausea but my daughter who is a pharmacist was with me at the appointment and told the doctor that they are having a hard time getting the injection form in so he put me on the pill form. I take it on Monday so if I get sick I'm sick during the week rather than the weekend when my husband is home and we might want to do something or go to our place at the lake. I have had a very little nausea and it's hard to tell if it makes me any more tired as I battle terrible fatigue anyway. I have compazine on hand so if the nausea is bad I at least have that to take.

I wish you good luck on your new meds. Sorry you are joinging our gerd family. I have it really bad and the flares that I get in the middle of the night are so painful that I am thankful I have the GI cocktail to take or I'd be at the ER all of the time. Even with the bed elevated and really watching what I eat I still get the terrible flares. I'm due for an endoscopy and I just haven't gone back to the gastroenterologist as I have been trying to deal with the lung nodule and ground glass problem and chest pain problem. If that can ever get resolved and I get some answers then I can squeeze more appointments and more procedures in.

Warm hugs,

Peggy

#13 chockers

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Posted 26 July 2009 - 08:14 AM

if methorexate works its a wonderfull drug .Its got me moblie

been on it 2 years now and one month .
Love Christine

#14 LookingUp1979

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Posted 17 August 2010 - 03:08 AM

I have morphea too - coup de sabre linear morphea on my forehead.
I've just started taking methotrexate.. on 10mg this week, then upto 15 in two weeks.
You seen any improvement?
Hope you are doing ok.

#15 Amanda Thorpe

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Posted 18 August 2010 - 02:02 AM

Hello LookingUp

There are many people on the forum taking methotrexate with the usual maximum dose being 15mg. I have been on it for over a year and can't really say whether it has brought improvements or not because I don't know what I would have been like without it. I developed myocardial fibrosis (currently not active) and class 3 limited heart failure whilst on it but who knows how bad I would have been without the methotrexate? I'm personally for medication.

Take care.
Amanda Thorpe
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