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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 nickyhj

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Posted 04 June 2014 - 09:35 AM

Hello,

 

I was diagnosed with Morphea in January 2012 and have been on Methotrexate since September 2012, I am also taking folic acid.

I just wondered if anyone else has experienced weight gain whilst being on Methotrexate?

Since I started it I have put on around 8 pounds and no matter what I do I can't seem to lose it.

 

Thanks,

 

Nicky :)



#2 Joelf

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Posted 04 June 2014 - 11:28 AM

Hi Nicky,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Morphea since January 2012.

 

I've never taken Methotrexate, so can't advise you from my own experience, although we do have many other members who do take it and I'm sure they'll be able to give you some first hand advice. Although Methotrexate is used to treat Morphea, as are Glucocorticoids, UVA1 phototherapy is now the recommended first-line treatment and I've included a link to our medical page on Morphea Treatments, to give you some more information.

 

I can empathise with you over the weight gain due to medications as I also take Prednisolone, which sadly is notorious for that particular side effect, although I wouldn't believe it when I first started taking it, thinking that it wouldn't affect me (how smug can you get? :rolleyes:  :wacko:  ) Unfortunately, having been on it for over five years, I now have most of the predicted side effects :( (except, thankfully, the renal crisis one! ;) ) However, I comfort myself with the thought that without the medication, I would be feeling much worse and it does enable me to function reasonably normally, so the benefits out weigh the side effects, although obviously I'm not ecstatic about putting on weight!! ;)

 

Kind regards,


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#3 Amanda Thorpe

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Posted 04 June 2014 - 02:57 PM

Hello Nicky

 

Welcome to the forums! I have taken methotrexate myself and don't recall weight gain issues nor could I find it as a listed, known side effect. MedicineNet.Com has a very thorough list of possible side effects and again weight gain is not mentioned.

 

Is it possible that because of the methotrexate albeit indirectly, you've not been feeling yourself and have become less active, maybe eating a bit more comfort foods? Although morphea may be a localized form of scleroderma, not affecting internal organs, it's still scleroderma and nothing to be sniffed at and methotrexate is nothing to be sniffed at either.

 

Did you know that 25% of people with morphea also have non skin related symptoms such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. In addition less than 4% of people with morphea have more than two non skin related symptoms. Let me just stress that this does not mean the morphea is becoming systemic, localized and systemic scleroderma are different diseases and it's possible, although, rare to have both.

 

As it happens I have diffuse systemic scleroderma and unfortunately morphea and bullous morphea which is a blistering disease. Nice!

 

Anyways, as Jo has said UVA-1 Phototherapy is now the first recommended treatment for morphea so perhaps you could try this instead? Have a look at Medscape.net for a list of side effects.

 

Take care and keep posting.


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#4 Shelley Ensz

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Posted 05 June 2014 - 07:54 AM

Hi Nicky,

 

I hope I may I safely assume that you've already discussed your weight gain concern with your doctor(s)? 

 

I may be wrong, I often am, and please keep in mind I have no medical training at all. As I understand it, weight gain is not a typical side effect of methotrexate; however sometimes it causes edema (swelling, water retention) which can add some weight. More likely though is a change in activity level or diet.  It sounds like you are gaining about two or three pounds per year.

 

You may have simply bumped up into a higher age category. We have a tendency to gain weight much faster and easier after age 25, for example, and the average adult gains about 2 pounds per year, but women generally gain more than men. Interestingly, most people might gain the most weight over the winter holidays. If you noticed your gain(s) then, that may give you some ideas for managing it. 

 

Your doctor is an important resource because they may have practical advice for weight management, and they can also make sure that it is not caused by underlying disease processes (like thyroid issue, edema, or medication side effects). 

 

Sometimes people develop bad habits after gaining just a few pounds, like skipping meals in an effort to lose weight (which dials back the metabolism, making it even more likely to gain weight), or skipping the gym because they feel more self-conscious, or consoling themselves with comfort foods when they feel bad about weight gain. It can even be as simple as a new fast-food habit, or taking a liking to a fancy coffee drink, a new office where co-workers bring more donuts and treats, etc. ad infinitum.  Scour your social history and lifestyle changes over the past few years, looking especially for any little change, which might have crept up on you.

 

I know all this, as I've enjoyed plenty more weight creeping than the average person...<sigh>...

 

:emoticons-group-hug:


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Shelley Ensz
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#5 nickyhj

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Posted 12 June 2014 - 08:26 AM

Hello,

 

Thank you for the advice. I think I'll mention it to my doctor at my next appointment. I know there are probably other factors that are contributing to it e.g. I recently moved in with my boyfriend and started a new job. I know I've also been quite stressed which probably doesn't help.

 

I have been having other symptoms with my morphea, I get a lot of headaches, stomach acid, Raynaud's and joint pain (particularly in my hands) which is not fun.

 

I have another appointment with the specialists at the Royal Free in London in October so I think I will mentions these when I go there. They were very helpful and supportive when I went last year so I'm hoping it will be just as good.

 

I will also focus on my diet and see what improvements I can make in the mean time.

 

Thank you all for replying :).



#6 tomisa

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Posted 14 June 2014 - 01:32 PM

Hi, I wasn't exactly sure where I should post this...

 

I was diagnosed with scleroderma in1993, at the age of 30. Around 2006, my weight started to go up significantly when I started taking Amitriptyline. After a few years after that, my rheumatologist put me on Nortriptyline. I was obese. Around 2010, my rheumatologist retired, and my current rheumatologist started treating me. I weighed between 210 and 220. I am five feet and five inches tall. In 2012, I started having shortness of breath with activity (like walking). My rheumatologist ordered an echocardiogram and a pulmonary function test (PFT). The echo showed mild cardiomegaly, and  mild pulmonary arterial hypertension (PAH).The pulmonary function test showed mild diffusion problems (decrease in ?). She referred to a pulmonary specialist. The pulmonary specialist ordered a chest X-ray. At my next appointment with him, he said the X-ray was normal. He said he wouldn't treat me until I lost weight. I was shocked.

 

Later in 2012, my then 21 year-old daughter began having serious psychiatric issues and attacked her dad. We had to file a Restraining Order against her. I didn't see any doctor until around February 2013, when my GP made an appointment for me to see him. One of the first things he said to me was, "Did anyone tell you your chest X-ray ahowed some fibrosis?" I was shocked. I told him, "No...the pulmonologist said it was normal." He showed me the X-ray, but I couldn't make "heads-or-tails" of it. He asked me when was I scheduled to see my rheumatologist again. I told my GP that her office should call me for my annual appointment soon. However, they didn't call me and I didn't see her again until the end of April, this year. I still had dyspnea. When I saw her, I told her that I was still having shortness of breath. She ordered a new echocardiogram, PFT and a CT scan of my chest (my first). About five days after the echo, I received a letter from her stating that the echo showed "No significant change compared to the previous one", meaning there was still PAH. Next, I had the CT scan. A day or so later, I received a letter (on a Wednesday) from my rheumatologist informing me that the CT scan "showed no evidence of fibrosis", and if I was still having shortness of breath, I should follow up with my GP. That Friday, my GP's office called and said that he wanted to schedule a phone appointment for later that day. When my GP called, he told me the CT Scan showed "several nodules" on my lungs (!). I told him that my rheumatologist had informed me that the CT scan was normal. The next Tuesday, I received a "Continuation" of the Radiology Examination Report for the CT chest scan. In the History section of the report, it mentions my scleroderma and "dyspnea on exertion". (However, I also have it when I am just sitting.) It mentions that the scan was done "without IV contrast". I don't know if that makes a difference. I'm skipping the medical terms so I don't make my reader's head spin. Several findings in the heart area were described as "not significant". There was "moderate" cardiomegaly and a "small amount" of pericardial fluid.  No pleural effusion, soft tissues are "unremarkable". No pneumothorax. It goes on to mention three, 3mm-4mm pulmonary nodules . One of these was a 4mm "groundglass" nodule . The report continues, "If there are no significant risk factors for malignancy, no specific follow up is recommended; if there are risk factors for malignancy, recommend 12 month follow up CT chest." There were no areas of bronchiectasis or fibrosis identified. There was scarring or atelectasis in the medial right middle lobe. ( I have read that a finding of atelectasis can be due to not inhaling all the way during the scan.) 

 

That's basically the gist of the report. I gradually decreased the Nortriptyline (with a doctor's permission) and, as of this week, I am no longer on the Nortriptyline. I still weigh about 220 pounds. I am concerned because I have to see the same pulmonary specialist on Monday (June 16th). I think he's the department Head. I have read that, as soon as PAH is detected in a scleroderma patient, it must be treated aggressively - even if it is asymptomatic. I have also read about "Pickwickian Syndrome", a condition where obese people develop PAH because of the strain the weight puts on the body.

 

Can anyone give me any advice on this? Does the scleroderma "trump" the obesity in PAH? I sometimes have chest pain (recently) as well as occasional bouts of coughing (also, recently). Is the pulmonologist justified in delaying treatment until I am no longer obese?



#7 Joelf

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Posted 16 June 2014 - 07:02 AM

Hi Tomisa,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Scleroderma for the past twenty years and that you have been diagnosed with Pulmonary Hypertension and I've included a link to our medical page to give you some more information.

 

Interestingly, we have another thread regarding the treatment of obese patients and patients with various addictions and I've included a link to it here; I do hope you'll find it helpful.

 

Please do keep posting and let us know how you get on with your appointment with your pulmonary specialist.

 

Kind regards,


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#8 Buttons

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Posted 17 June 2014 - 08:51 AM

I have been taking Methotrexate for about 2 years and have not gained weight, actually.  I found that I could lose the weight I had gained (2.5 stones) and now feeling much better for it. I think some of that is due to the fact my joints have been much better and so able to get out and cycle for exercise.

 

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