Methotrexate and Amitriptyline please share your experience

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.

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.

Dear Aton,

Thank you for your sweet message. However, don't forget that my sufferings from Sjogrens have been minimal compared to many people on this site.

I hope you'll manage to co-exist with your symptoms too.

Lily

Thanks

Have u ever tried using Restasis for dry eyes??

Could you able to produce saliva or not???

How is your dry mouth now??

Are you using humidifier in room ???

Did u do lip biopsy??

I think blood work also came positive??which test

Are you using preservatives free eye drops??

Thanks again

Thanks

Ashes j

No to Restasis - I tend to resist all drugs, especially immuno-suppresssants, even in topical form.

Yes, I've always been able to produce enough saliva once I start eating, as long as I avoid extra-dry foods.

My mouth is not too bad at the moment. Nothing like the way it was 20 years ago at the outset. In fact it was never that bad again after the first year. Just at the moment I'm suffering a very dry mouth during the night, but I've learned that all my symptoms eventually go away if I don't put too much attention on them, so I don't do anything about it apart from keeping water handy.

No, I've never used a humidifier.

No - I've never had a lip biopsy, nor would I. Risk of nerve damage.

Haven't got the blood reports in front of me now. RF and CRP I recall, plus the anti-salivary gland antibodies. Not really too interested in my blood results anyway as I wouldn't consider medication unless the condition became totally disabling.

Yes, as already mentioned, I did use preservative-free eye drops during the really bad phase nearly 20 years ago but I manage just fine with the much cheaper normal drops now.

Good night!

Lily

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