My Rhuemy is starting me on five 2.5mgs Methotrexate once a week and 25mgs Amitriptyline at bedtime. I am also to take a 1mg tablet of Folic acid once a day. All this for Arthritis I am feeling a liitle blue about this new addition to my regular meds. The info online about the MTX is pretty negative. Please share with me your experiences and advice concerning this type of therapy.I am grateful to have you ladies to turn to.
Thanks,
Sally
Hi Sally,
My RA is also looking at starting me on Methotrexate I am quite concerned about this as I have loads of reactions to medications. I had to come off Hydroxychlorquinn do to reaction and problems that it caused with Muscle pain.
So any info would be helpful.
Regards,
Mandy
From what I know Amitrptyline causes dry mouth and therefore aggravates that symptom of SJS. Does the rheumy know you also have SJS?
Hi Shira
yes he is the one who diagnosed me. Most of my dryness is under control and that is the kind of side effect that I can deal with. It is mostly the MTX that has me concerned I would just like to know if the side effects are temporary and whether or not people think the drug has helped them.
thanks
Sally
Sally i hope it will work.. Im scared and new to all of this...I think the meds have sid effects
need yo lok
do you have dry mouth will this help theesesmed
Yes Sally, I was prescribed amitriptyline for depression way back in the late 1960s, nearly 30 years before my first Sjogrens symptoms, and it caused all kinds of side-effects. These included dry mouth, blurred vision, feeling faint when I got out of bed in the morning and strange tingling sensations in my lips.
The one good thing about amitriptyline - as opposed to some of the modern anti-depressants - is that you can stop taking it whenever you like without it causing withdrawal symptoms. I stopped from one day to the next after a couple of months when I hadn't noticed any effects on the depression, only the physical side effects.
Give it a try. You can stop whenever you want so there's nothing to fear.
Thanks for the info Lily, I appreciate it
Sally
Hi Sally, I just re-read your initial post in this thread and I can see you're concerned about starting MTX, although your question was about amitriptyline. I confess I'd be worried about taking MTX too! Powerful immuno-suppressants of this kind should be reserved for the most serious cases of RA that cause severe pain and disability, and have resisted all other treatments.
I'm just wondering how painful and disabling your RA is at the moment, and also whether you've had it non-stop for years or whether it sometimes goes into remission. Clearly it's bad enough for it to be getting you down, or your rheumatologist wouldn't have put you on an antidepressant.
But you know, just because a doctor prescribes something for you, it doesn't mean you absolutely have to take it. Sometimes doctors feel pressured into prescribing draconian treatments because they feel a bit desperate when faced with a patient in severe pain.
I'm not saying you shouldn't take MTX, just suggesting that you think about whether you really need it.
Hi Lily,
he prescribed th Amitriptyline for better sleep ( the pain wakes me at night) and for the migrain headaches I end up with after a day of pain at the bases of my neck. I was tested for JRA when I was a kid and have had arthritic like flares all my life. I went to the doctor last week hoping for an injection of Cortizone (I had this before with a different doctor) because I can no longer close my right hand. My fingers on both hands are swollen and have nodules on the joints and no amount of NSAID has shown to improve my problem. My Doctor seemed a little stunned at how much inflamation I have developed. Cortizone is not enough to prevent joint damage and is only a temporary fix. So we are starting with MTX. I agree with him on this therapy especially if it will prevent damage I just feel a little blindsided by the diagnosis. (bummer). The pain is bad though and I have it in my knees ,balls of my feet and neck so I'm willing to give the MTX a shot...just wish I knew what to expect.
Thanks,
Sally
Oh Sally, you really have my sympathy over those stiff, swollen fingers and nodules. I can remember getting that 35 years ago, when I had my first - and worst-ever - attack of RA. The nodules on the insides of my wrists were especially painful. I remember that I kept banging them in the night and waking myself up with the pain. My then GP had the cheek to tell me the nodules, which were all over both hands and had been there for weeks, were mosquito bites! Fortunately, I live in a country where we can self-refer to most specialities, so I was able to take myself off to a rheumatologist.
I hope you get some results from the new treatment.
Lily
Well I don't have oseoarthritis arthritis but my arthritis has no RF! I don't have RA! I have Psoriatic arthritis! If you have had difficulty having children or acne as a grown up or are hairy, or very painful periods or swelling and it's been called oseoarthritis then it's PsA. If you have pain it's almost certainly oesoarthritis, my husband has pain, with 'oseoarthritis' but with a very strong hisory of Rheumatism! His Grandmother was told she had RA but seeing her Aunt who lived with pain until she was 102 and his mother until her 100 birthday! I'm not sure it was RA! GP has refused hubby the tablet! I took 7.5mg and it changed my life overnight! The consultant said it doesn't work that quickly but I know it did I'm the person who took 3 little tablets. Be brave if you can take the tablet please tell me in 4 weeks time if it has helped. I know there is a very long list of horrible problems, I inject 25mg and I have never had any of them. However if you are still unsure either don't take the tablet or if you can cut the tablet in 2! I know they are tiny! But if your brave please tell me! Did your GP suggest a folic acid tablets?
Hi Pam,
Thank you so much for your reply and words of encouragement. I am taking a small vacation next week so I plan to start the MTX when I return. My goal is to power thru the side effects and reap the benefits of the medication. (That is my plan) It is comforting to know that there is light at the end of the tunnel. Thanks again,
Sally
Pam,
I forgot to mention my Dr. has me on 1mg of Folic Acid a day. Do you know what this is for?
Thanks,
Sally
Sally well done, you sound American in the UK we say vacation? However it matters not please do tell me how you get on!!!
Yes it's necessary to stop the MTX from making you anaemic Folates leaves like green veg or salads of any kind. To be really healthy exercise eat what my consultant suggests a Mediterranean style diet with fruit and veg, olive oils and natural sugars not refined but unless you have high BP you need some as I certainly listen to my body and eat what it tells me! As I have joints that bend too called EDS I do need sugar but try and eat in fruit or seed bars as a mid day snack. If your double jointed then you do need to tell your GP!
hi lily,
Thanks for the post.
I have one question.I am 39 years old male and having symptoms of Sjogern. Could you please tell me when it was diagnosed in your case and what test you were done when it was diagnosed.
How are you doing now?
I am very stressed out
Thanks for ur help
Hi Ashwani,
You're obviously one of the exceptions that prove the rule! Male and in your 30s, whereas it's more common in women and starts on average around age 50.
I started getting symptoms of Sjogren's around the age of 50, though I'd already had a severe attack of rheumatoid arthritis, lasting about six months, completely out of the blue in my mid-30s. The condition wasn't diagnosed for another ten years, however - though that's a very common story with Sjogren's sufferers. In my case it was diagnosed partly from symptoms, partly from blood tests - general inflammation markers plus anti-salivary gland antibiodies. Sjogren's is a syndrome - i.e. a whole collection of different signs and symptoms, with practically every individual having a different subset of symptoms rather than every single one. This means methods of diagnosis are variable. As far as I'm aware, biopsy of the salivary glands just under the lips, which I've never had, is the only cast-iron diagnostic tool, though it's my understanding that it's possible to have a normal lip biopsy and still get diagnosed with Sjogrens.
After 15 years of varied symptoms - dry mouth and eyes, peripheral neuropathy, carpal tunnel syndrome, Reynaud's syndrome, under-active thyroid etc. - I went into almost total remission around the age of 65. This lasted six years, until eight months ago when I had what narrowly missed being a very nasty accident, after which some of my old symptoms returned, together with a couple of new ones. I think this was due to a mixture of the physical effects of the accident and the shock. Now, however, things are just beginning to calm down again and I'm expecting to be more or less back in remission in a few months' time.
You should bear in mind that Sjogren's, like all auto-immune conditions, is very prone to flare-ups and remissions. Even if you're suffering badly right now, it doesn't automatically mean you'll be like this all your life.
Thanks for the reply .It means a lot to me.Lily although all my blood markers are negative including CRP,ESR,ANA and anti ss antibodies.Actually my problem started 7 months ago when I had stomatitis in my mouth..Its kind of inflammation of buccal mucosa ,after 1 month of that problem I had burning in my eyes and dry mouth.I went to see the specialist who is expert in dry eyes and in practice from last 40 years .He said you do have dry eyes but it is not suggestive of sjogern syndrome .Because he said in SS your cornea gets affected and you can see patches on cornea.And dryness in mouth could be because of stomatitis in mouth.
Could you please in your case what was the actual story from beginning and what are you taking to relief the symptoms of dry eyes and dry mouth.I would really appreciate it
You're not the only one on here to have severe SS symptoms without raised markers. And I'm puzzled as to why your ophthalmologist is insisting you can't get a diagnosis of SS without corneal problems. I'm sure there will be plenty of us on here who don't agree with his opinion.
I'll try and re-construct the progress of my symptoms, though it all started more than 20 years ago now.
The dry mouth came first. I kept noticing a stale taste in my mouth and my lower lip sticking to my gums. But I've always been OK when actually eating, as long as I avoid things like dry bread or crackers. Then I developed deep, painful cracks at the corners of my mouth that kept splitting and bleeding when I opened my mouth to eat. This continued on and off for about a year. My GP told me it was allergy (which I knew it wasn't) and my dentist couldn't see anything wrong. I also got a raised, sore rash (probably fungal) on my upper lip during that time.
The mouth problems died down to manageable levels, only to be followed by peripheral neuropathy. Initially, altered sensation in one big toe, but spreading to all my extremities over the next ten years. This stopped abruptly (literally overnight!) ten years later, though it still occasionally comes back now. During the same period I started getting sore, sticky eyes, with frequent attacks of conjunctivitis. I got the same bleeding cracks at the corner of one eye as I'd had in my mouth. This eventually died down too, though still recurs from time to time, especially in the last few months.
In the next few years I suddenly started getting Reynaud's syndrome, for the first time in my life. One day my entire left hand went cold and white, even though it was a warm day. I also woke some days with my left hand fixed in a painful claw that I couldn't open till around midday. I saw various specialists - dentist, ophthalmologist, dermatologist, rheumatologist but they all said there was nothing wrong except mild inflammation. By this time I was starting to get very tired too, and was losing quite a lot of hair. My GP said it was all down to old age (I was about 55 at the time!) until the day I managed by pure chance to throw an impressive Reynaud's attack while actually in her office. That was when she ordered the blood test for anti-salivary gland antibiodies. She also sent me to an endocrinologist, who ordered a special urine test which diagnosed "covert hypothyroidism". My TSH had been sky-high for years, but as my T3 and T4 had always been at the low end of normal my GP had insisted I didn't have a thyroid problem.
I don't take any medications to relieve my symptoms, except for homeopathic remedies when I have an arthritis flare-up, and a mucolytic most nights. This is because I also have a tendency to very thick catarrh that clogs my air passages and causes sleep apnoea. I take bromhexine (Bisolvon), which I don't believe is available in the UK - if that's where you are. I use basic tear-replacement drops, though I sometimes used the more expensive ampoules when my eyes were very sore. These don't contain any preservatives, but neither kind is reimbursed by my medical insurance, so I use the ordinary kind as far as possible. During the period when I kept getting conjunctivitis, my GP prescribed chloramphenicol drops. Oh, and I take thyroxine for my under-active thyroid, but that's not strictly a medication. And that's it. Then again, my symptoms aren't very bad most of the time and can usually be managed by life-style measures. But there are plenty of people on this forum who will be able to advise you about meds.
Awesome lily ..I never seen a person like you in my life.You are really a god person,so helpful.
It's good to hear that even you can live longer with this problem .
Symptoms you can manage With life
Style and certain medication.
My mouth get dry at times but it's not that bad as my lips touches the gum.
Thanks Aton.