Itching

[Mctd]

Morning everyone, just a quick question. A new rheumatologist is questioning my Sjogrens diagnosis and told me to stop taking Amitryptiline. He thinks that this is causing my dye eyes, mouth and sinus/headache issues, even though I had them before I started taking it... That was about 5 weeks ago and this last few days my body has started itching all over. Its making me scratch till my skin is raw, has anyone else experienced this? I was originally given it for neuropathy, the sensation I have now is very similar but much worse than it was originally.

[Chris21]

Hi Mctd, my consultant suggested i didnt have amitriptyline as it would make my mouth very dry and not suitable having sjogrens. i also have problems with neuropathy and was given pregabalin.

if you think amitryptyline didnt cause you any problem, you could argue this now that you are having problems since stopping, or ask for an alternative that will help.

[Mctd in reply to Chris21]

Hi thanks for your reply. I am going to pick some pregabalin up this morning. I've not slept all night and actually took a fork to my back! It's driving me insane. I was just so shocked as its far worse now than it ever was! I was diagnosed with fatty liver a few months ago and my imagination has been running wild, convinced myself i had severe liver cirrhosis (need to keep off doctor google...) I'm going for gland testing next week, so when I see the consultant again, I'll discuss itvall with him. Once again thanks for replying. J

[soul22 in reply to Mctd]

Hi nice meet you ☺️

Oh no don't interfere things that are helping

Gabepentin pregnalin amitriptyline all causes dry mouth etc but treat well various conditions.

Tell him how was before sytpoms started hate when drs change without understanding benefits.

All best

[Mctd in reply to soul22]

It'd be quite laughable really if it wasn't for the fact I feel ill. None of them seem to know what they are doing... I've just been collect a prescription for an alternative he suggested -:Gababentin... Why prescribe that if it also causes dry mouth? 🤔

I'm desperate now, I've so many symptoms that could open up a whole new diagnosis. I'm having an endoscopy and seeing ENT, all at the request of the 2nd consultant who is questioning sjogrens.

I do have issues with my stomach but that has been on going for years. I think he thinks that maybe acid reflux is causing the problems with my respiratory system. He might be right... However, since March I've been having respiratory problems, but they have changed slightly as I also had a chronic cough - like whooping cough. I've had 2 short courses of steroids for this which has helped, but have now started having changes in my urine and bowel movement. What, if after all this time, it turns out to be a liver, kidney or pancreas issue. It's never ending, I'm not surprised some people just give up... Thanks for your reply and sorry for moaning. X

[soul22 in reply to Mctd]

Bless youYour not moaning

It's important talk about his decision there not always right.

He would have prescribed Gabapentin based on symptoms.

I to have reflux I'm showing high positive for sjorgens syndrome.

I'm under ENT I seen gastroenterologist I do have gerd.

I'd persevere u can get a spray from GP for dry mouth I have one.

I'm also suffering chronic cough not whooping cough but similar had mouth surgery once healed be on low dose steroids for new diagnosis polymyagia rheumatica had problems years new rheumatologist consultant diagnosed start them once healed from oral surgery.

Bless you your GP can test urine and bowel samples if needed

It may not be pancreas liver heals itself mine but high due to multiple life saving IV antibiotics sepsis fatty liver you just change what you eat lose weight and it reverses.

Pancreas I had problems but ok now

I hear you it is rest draining been chronic ill your amazing your strong your worth excellent care.

I had many battles in disagreement with consultant in past I brought evidence back up my side things whether it's tests family history.

You got this here for you

[CaviarRed]

Hi sorry reply is late. Yes, Amitriptyline can cause dry mouth etc but please speak to your specialist. If you feel Amitriptyline is doing some good they must listen to your thoughts. It's part of the involvement of patients in consultations. Your views matter it's not just a case of doing what they suggest these days. Good luck with everything 🩷💜

[KnitSewPurl]

Whether you take Amitriptyline or Nortriptyline they both cause dry mouth . But as to whether they were the root cause of it is another nothing . You need to find out if you have vag dryness, nose dryness, mouth extremely dry ,no ear wax and that your eyes are also extremely dry as well. All these , if they account to before taking amitriptyline and not after ,I would there for let your consultant know about this to set the record straight. Your skin would also be very dry anything you apply would just absorb immediately. I am on Nortriptyline been on it for 17 years. But have had dry vag before taking Nortriptyline and dry ear with no wax and dry mouth and dry eyes . But mouth has never been so thirsty like it like currently. I have to carry a water bottle every where with me to constantly moisten my mouth . I am on eye drops and eyes creams plus heat pads. Use a moisturiser soap when I shower at the end of my shower to keep my skin moist. It keeps it good and doesn't make it dry . So far so good I have not any problems with that bar moisturiser shower they do a liquid version . But found the bar version is much better than the liquid version. The oils stays and soaked on the skin much longer. But you don't feel oily at all. It kinda or a weird feeling but works . One of the best I have found.

It is actually Lush product. Yes never thought I would rave about a Lush product 😂 they are small but certainly works well on the skin. As a natural product.

When your skin is dry it becomes itchy. So you need to keep it moist it order to stop the itchiness .

Hope you get it all sorted out soon x

[Mctd in reply to KnitSewPurl]

I take Pilocarpine for dry mouth, eye drops for my eyes and my optician has said there is some slight damage to my retina. This 2nd consultant has stated that my mouth is very dry, with no saliva pooling. I'm also taking Hydroxychloroquine and Fluoxitine for Raynaurds. I drink as much as I can. But nausea and acid reflux has been a problem lately, so eating and drinking has been problematic. I startec on Gababentin yesterday so hopefully things will ease. I scratched myself so hard yesterday I've got bruising and made my back bleed. Fingers crossed 🤞

[KnitSewPurl]

I came off Hydroxychoroquine now 5months and counting because my eye consultant saw macular changes in my eyes and they could not tell if they were hereditary or caused by drugs so they wanted me off the drug for a year to see if that made any changes .🤷 At the same time I started on Alendronic Acid 4/5months before which they did not ask me about it when I researched it I found that Alendronic causes Macular changes 🙄. So I took the decision to stop it myself instead of causing more damage to my eyes.Prior to that my eyes has been very stable. There has been no sudden changes at all. I am taking Additional calcium supplements via prescription due to low bone density. It is very mild -On one leg it took ages for my GP to accept responsibility to get the test results sorted out took me more than 6months to get it after me calling around and then getting the hospital that took it to give the their number to give to my GP to get them to call oh yes they got a roasting from them alright. I still have proof that they sent me for it . Because they claimed that they never sent me for it 🤦🤷🙄..

Not on anything for my mouth apart from Ximelts which I occasionally have. They do work very well. I just like to stick with natural stuff as I am on loads of meds already so I don't like to keep adding more drugs . I have far too much drugs/meds to cope with for my age especially when I have started at a young age. There is a few that I would like to come off but I would struggle to do so. Knowing it would trigger my migraines severely.

Haha that is life I guess 😂

[Mctd in reply to KnitSewPurl]

All the meds concern me too. A couple of weeks ago I was on 17 tablets a day - 6 steroids a day short term for sinus/chest issues. I just get the impression that because things for us are not straight forward, GPs can't be bothered. I've been to 3 walk in centres this last couple of weeks as I couldn't get an appointment with my GP - on all occasions I have been quite ill. This week I started with changes in my urine/bowel and was very uncomfortable in my abdomen. They referred me back to my gp, who won't see me for a week. Given that I was diagnosed with fatty liver at Xmas and told to go back straight away if i see any yellowing, well my skin looks like ive got a tan ( my friend commented on it as I don't sit in the sun). But nope, nothing they can do for a week. You can imagine my imagination has been running wild now I've got chronic itching...

[KnitSewPurl in reply to Mctd]

Ok , this is what you have to do if you think you have fatty liver , you need to go on a low cal and low fat diet . Like soups no carb , just soups. It will help . Only have 1 slice of bread with no butter on it . No cheese , eat fish either steam or oven cooked and chicken this is once a week . There is certain things with fatty liver it is quite bad especially if a person is a smoker or a drinker it can be quite dangerous. If they are not then diet is the way to go . My hubby had non alcoholic fatty liver he was diagnosed of it when they wanted to do his gallbladder op. So , they made sure he went on a crash diet to reduce the size of the fatty liver by doing that there is certain amount of calories you can only have in a day . Which means he can only have several tins of soups in the day ,so we broke it down . Until such time his body got used to having soups. Weight watchers soups is probably one of them the other one is having half a tin of the normal tin soup works out just the same as 1 tin of weight watchers tin soup. So hope that helps .