Rheumatoid arthritus/sjogrens syndrome

[Prairie]

Hi all I'm new to this site and would love to hear from anyone battling with these ongoing diseases. I have rheumatoid arthritis and secondary sjorgen syndrome and chronic eye disease with occuring eye ulcers. I'm on methortrexate injections and steriod eye drops. I've only just started the injections and have to see if they are going work. I suffer with side effects of feeling sick weight loss and extreme tiredness everyday. I've been on them six weeks now. I take folic acid vitamin d tablets omega eye oils and lansoprozol for osphegitus. I have more bad days than good days. My hand joints and ankle joints not good at the moment I seem to have flu like symptoms and terrible flushes after I have taken the metho. I may only get one day feeling okay then it's back to the injection. Hopefully after a few more weeks I start to feel better. Anyone's comments would be appreciated thanks

[sylvi]

Welcome Prairie, am sorry that you have joined us,but glad that you have found the best group of people going. I have eye problems and my tear ducts have been cauterised to stop the tears falling straight through. I have to say that it has helped my eyes,but the problem with my eyes is the swelling round them. I am seeing the specialist tomorrow so we'll see what he says. Sending you hugs.xx

[Prairie in reply to sylvi]

Hi Sylvi thanks for your comment. I had my tear ducts plugged last June 2012 with what they call rods. They are suppose to help a little. I've had more eye ulcers lately than before I had this done. Speaking to my eye consultant there's no cure for this condition. It's trying different methods to prevent the ulcers occurring. At the moment I'm on the steroid eye drops along with lots of eye drops. Let me know how you get on. Hope all goes well tomorrow. Xx

[Hidden]

Hi Prarie - welcome to this site. I have both these conditions too but less extremely than you by the sounds of it. I use Lumicare Hypermelrose preservative free eye drops which work well for me and Biotene synthetic saliva gel plus salival stimulating pastilles.n I don't have eye ulcers or disease as such - not yet anyway and the dry eyes don't get me down too much except at night when I struggle to read properly. I am also struggling with MTX just now so not great person to advise but I think in my case it's because of some underlying gastric condition rather than the drug itself and even the injections are reducing me to nothing much just now although they have worked brillaintly for my RA. I did fine on the injections for a while and then came off for a month to see what was causing the secondary sjogrens and foul taste - only to find these continued. The foul taste and nausea have now worsened dramatically but I'm almost sure it's a combination of the MTX, Omazaprole and my GI problems (could be gallstones, ulcer or hernia or GERD/ reflux). Stay around this place is wonderful for support and advice really. Tilda x

[Prairie in reply to Hidden]

Thanks Tilda for your comment its very helpful when we can share and understand how people are feeling. Will keep in touch so please I've joined this site

[martha]

Hi Prarie, just to say welcome, am new on here too. Martha

[Caza]

Hi prarie,pleased you've found this site but sorry you've had to join us. The guys on this site are brilliant & I've learnt more from them than anyone else. Hope you get some son relief soon. Take care x

[Caza]

Pain not son!!

[helixhelix]

Hi there, and welcome. It took me 9 weeks to get used to the MTX so hopefully the side effects will wear off for you as well soon. Polly

[Maggie6553]

Dear Praine,

I can understand how upset you are with the many effects on your body, with Rheumatoid Arthritis, I have had the disease for over ten years and find that more new symptoms appear.

I have steroids, methotrexate, folic acid, and salazopriyn (four tablets a day)-these keep me walking!

I also developed sjorgen's syndrome and now have Viscotears eye drops four times a day and these have really helped my eyes from becoming dry and painful.

[Prairie in reply to Maggie6553]

Hi thanks for your comment can I just ask you when your taking methotrexate and steroids...are the steroids injection every so many months or do you take steriod tablets everyday. It's just when I was on the steroid tablets everyday I felt so much better and had energy then was weaned off. When I got the steroid injection it made feel tired very much like the metho. Just wondering if tree are different steroid brands???

[helixhelix]

Both the injections and tablets are corticosteroids, just slightly different types although they do a similar thing in reducing inflammation. I don't know anything about steroid eye drops but have had courses of steroid tablets and the injections at different times. My rheumy doesn't like to give more than 3 injections a year, and will only prescribe steroid tablets if there's really no other choice as they are not recommended for long term use. But now I have adjusted to Methotrexate I don't need either, so hang in there and you should find that things get much better soon. And if they don't then ask for your meds to be reviewed as there are other things that can be tried apart from steroids. Polly

[Dogrose]

I have RA and secondary Sjorgren's too, my eyes can be terribly dry but I also have scleritis in one eye, I've been trying steroid drops but it only gets better if I'm on oral steroids. I did try MTX for a while and all my dryness symptoms went (my thick dry skin peeled off like a snake, weird, and my skin underneath was all soft and normal!) but couldn't carry on with it as it made me severely depressed and anxious. Leflunomide didn't touch the Sjorgren's and Humira seemed to make it worse, unless that was a reaction to the flu/pnuemo vaccine I had at the same time. Currently I'm on oral steroids only until my treatment gets sorted and my eyes are just about bearable, I have drops called Hylo-Fort from my eye consultant. Oddly enough, I had two teeth out in Feb and have had no trouble with a dry mouth since then! xxx

[Prairie in reply to Dogrose]

Hi thanks for your comment. I suffer badly from eye ulcers and because I'm on lots of steroid eye drops lubricants etc..the eye doctor wants to put me on an oral antibiotic. If you don't mind me asking what antibiotic are you on? Also when I started on the metho injections been on them now six weeks they make my eyes worse. It took three weeks for me to fight the ulcer on my cornea and it got infected so when I next see my rhemy consultant I'm goin ask a lot of questions about this metho drug. It may help with ra but definitely not my eyes also its a horrible sickly drug and it causes me days of depression where I will just burst into tears and makes me so tired and weak. It's a vicious circle.

[Dogrose in reply to Prairie]

I don't take any type of antibiotic, the inflammation that causes the scleritis is autoimmune not an infection, I don't really seem to get infections on immune suppressants, probably because they don't seem to work to well for me! I stopped taking MTX of my own accord, I thought 'blow this, this is too nasty!' and stopped and told them I wasn't prepared to take them any more due to the side effects and I was put on Leflunomide instead. I'm always surprised when people put up with awful side effects for months or years but maybe it is the norm and I'm a bit weird. xxx

[Tillytop]

Hello Prairie and welcome.

I am so sorry you are struggling so much but hopefully you will find that sharing with others in the same boat will help you to feel less alone with it all. It certainly works for me. I too have RA (18 years now) along with secondary sjogrens and some kind of, as yet, undefined stomach problems.

Re the methotrexate - I know that it works well for some people (myself included) but equally some people (myself included) are just unable to tolerate it in either oral or injected form and if you continue to struggle so much with it I would really recommend you discussing alternatives with your rheumatologist. I don't know which other meds you may have tried but there are lots of them out there so hopefully there will be one - or a combination - which helps you without unacceptable side effects. I've taken many of the available meds over the years and have taken most of them without being troubled with significant side effects.

Re the eyes - I really can sympathise on that score. My eyes are severely dry and I have nerve damage in one eye due to a previous shingles infection. I use steroid drops in the shingles affected eye and HyloForte eye drops and Lacrilube ointment the rest of the time. I haven't found great relief from the Sjogrens dry eyes/mouth from any of the RA meds although the consultant tells me that my current drug, Rituximab, is being trialled as a treatement for primary Sjogrens and may help somewhat (I thought for a while it may be helping some but I'm not really sure). I had my tear ducts plugged too and it did help but the plugs kept falling out so I am waiting to be well enough to have my eyes cauterised like Sylvi has done. Has cauterisation been mentioned to you as an option (presumably the eye ulcers would need to be better first though)?

Thinking of you Prairie and I really hope you do find some answers soon.

Tillyx

[Prairie in reply to Tillytop]

Hi Tilly thanks for your comment. I joined this site yesterday and happy its so helpful reading everyone's comments.. .I had plugs fitted last year and cauterised wouldn't make my condition any better. My eye doctor is very good. Hes looked into different methods for me and because theres no cure its just finding out what works. I'm on steriod eye drops lotemax its an inbetween steriod not to harsh like dexamethesone 4 times a day carbomer gel 3 times a day and clinitas. I was on lacrilube at night for bed but that has a preservative in it and would sting my eyes so now im on duolube which has no preservative in it. I no longer produce tears which is part of the sjorgens and rhematiod inflammatory also my eye lids causing my eyes to ulcer where there is no glands. Luckily the ulcers occur at the bottom of my cornea not on my vision anyhow thanks again for you're comment prairie xxx

[Tillytop]

Thanks Prairie.

Sounds as if your eyes are really bad and I do feel for you. Although I struggle with mine I have never had ulcers. I'm pleased you have a good eye specialist though. I had Duolube too and found it much better than Lacrilube. But after the initial eye hospital prescription the GP wouldn't prescribe it because it was so expensive. Apparently it's something like £125 per tube and I was getting through a tube every couple of days! So pleased you are able to have it though and that it is better than the Lacrilube. My steroid eye drops are dexamethasone but I don't have to use them as often as you do.

Thinking of you and really hoping things improve for you soon.

Tillyx

[Prairie in reply to Tillytop]

Dexamethasone is very good but it's when you have to use them long term. They worked for me. My eye doctor gave me different brands of the eye drops as i mentioned and he said i was going on ones which cost more as i had tried lots of the others and suffered but he did say the sad thing is it's all down to cost not fare though for people like ourselves who have to suffer and it's like the metho if it works great but there are more expensive drugs out there and will still have side effects but it is sad when it all comes down to expense. Sometimes scary when its our health. Lovely chatting to you Tilly x

[Tillytop]

Hello again Prairie

Yes Dexamethasone works for me and I've been using it daily for a few years now - but only once a day so much less than you. It sounds as if you have a very good eye doctor and I'm so pleased for you because eyes are just too important to mess with. It is hard when cost comes into the equation I agree - specially when you know there is something out there which is better for you but that you aren't able to have because it costs too much. When the eye consultant changed my eye drops to Hylo Forte, I had to do a bit of negotiation with the GP because, athough not so expensive as the Duolube, the Hylo Forte is also apparently quite expensive. I knew I wouldn't be able to have both, so agreed I would go back to Lacrilube if he would prescribe the Hylo Forte for me. Shame because the Duolube was so much better for me and I was needing to use it in the daytime too.

I really do hope that things improve for you soon Prairie.

Lovely chatting to you too.

Tillyx