Sjogren's and Methotrexate

Allergies, blood and immune system
1

When I had my six monthly Rheumatology appointment at the beginning if this week, I was prepared for my daily dosage of Hydroxychloroquine being increased because they wanted to increase it six months before. I was reluctant then since I'd only been on the drug for 6 months and wanted to give it a decent chance of reducing my inflammatory markers and reducing my joint pains. Anyway, sure enough my dosage has been increased to 400mg a day from the original 200mg because my CRP has increased again after going down to below 5 it's gone back up to 8 and my ESR remains at 31.

​But what I wasn't prepared for was to be now put on Methotrexate 10mg to be taken once a week because I've only ever been told that I have Polyosteoarthritis along with my Fibromyalgia and SS, (plus many other non-inflammatory conditions lol), and have never been told I have Rheumatoid arthritis which is what I thought the Methotrexate was for regarding Rheumatology.

​So, I was just wondering if any other SS sufferers are on, or have been on Methotrexate at all and if so, were you told that you had Rheumatoid arthritis or Psoriatic arthritis?

​I start taking this tomorrow for the first time and have to then take 5mg Folic acid the following day. I've also been put on a 25 day course of Prednisolone to help with the inflammation in my joints which I've had in the past to treat asthmatic bronchitis so they shouldn't cause me any extra problems at least lol

​I have to have regular fortnightly blood tests re the Methotrexate for the first 2 months and then they will be done monthly to monitor my liver function especially.

​I'm kind of hoping that somebody out there will have been put on Methotrexate for their Sjogren's symptoms.

Thanks for reading this.

Hippyginger

2

Hi Hippyginger,

I was put on it for my SS but unfortunately could not tolerate it.  Lots of allergies due to the Fibromyalgia.

Regards,

Mandy

3

Hi there. Well this isn’t exactly what you are asking people. I have taken 5 DMARDs so far, including Methotrexate which I took in pill and then injectable form for what was thought to be RA but is now rediagnosed as primary Sjögren’s. I have also taken Prednisolone. I am currently on the maximum dose of Mycophenolate. 

I’m not surprised that your rheum has put you on it for joint pain/ inflammatory arthritis as MTX is commonly used for this, as is steroids. So if it’s an aspect of your Sjögren’s, as it was mine, then Methotrexate can work very well. It sorted out my swollen hands and pain but I wasn’t able to tolerate it finally. 

The thing that surprises me more is to find someone with SS who knows and is using their ESR abs CRP as a guide for disease activity as you and your rheumatologist are. My markers were abd still are much higher than yours - but nowadays my rheum abd vascular doctor I see at the Connective Tissue Disease clinic, tell me these are irrelevant for Sjögren’s. The reason I’m given is same as the reason Arthritis Research UK give on their info on Sjögren’s pages. This being that we have high concentration of immunoglobulins and antibodies so our inflammation markers will always be high and don’t represent inflammation as such.

I hope you tolerate MTX well. I too took it with Hydroxy and did very well for a while but then got too sick.   

4

Ps sorry for typos but am being driven just now so lots of bumps! 

5

Hi hippyginger,

Im was put on Methotrexate 2 months ago. 7 pills once weekly with a daily dose of folic acid. I took myself off of it because I started to develop Raynauds and thought it was due to the meds. I always had a normal blood pressure reading but after all these meds, something is causing low blood pressure results. Can't tell if its the MTX or the ranitidine twice daily. All I know is that I was put on a calcium blocker which may drop my pressure even lower. I was doing fine without the meds until last night where it was hard to even roll over in bed. Don't know if it is the weather. I was initially diagnosed with connective tissue disorder, then my Rheumy thought it was SS with Scleroderma and now he ruled those out and thinks its RA. The Methotrexate is supposed to be the treatment for all i guess. I am changing my diet and will only use the meds unless i can not bare the pain. Try it and see if it works for you. Everyone is different and I would not rule it out before trying it. Be strong, feel better and God bless.

6

I’m not on any of these meds but have SS. My neurologist has me on Azathioprine 100 mg dly. Seems to be the right med for me because I’m not any worse after 5 years. The neuropathy is about the same and I can still do most of my activities. Just wanted to ask how you are changing your diet. Gluten free?  I’m in a nutrition class and she highly recomends gluten free for autoimmune diseases. 

7

Hi I have Behcet's not Sjogrens but very similar. I have never been prescribed methotrexate but many people are using it in my help group who do not have ra. I am using hydroxychloroquune which you are also prescribed. I do believe that is also commonky used to treat ra. I have a friend with ra who is currently prescribed both. Hope it works for you .

8

I am wondering if your rheumatologist suspects you might have polymyalgia rheumatica. That is a autoimmune disorder that causes muscle and joint pain particularly around the hip and pelvic girdle and shoulders and arms. Although I found mine to be in my thighs arms and hands mostly. The elevated inflammation marker ESR is an indication of PMR. The prednisone that you're taking if it relieve your pain then it's a definite diagnosis of PMR. Methotrexate helps prednisone to work better. But as you stated methotrexate is often used for rheumatoid arthritis as well. I will warn you that methotrexate can cause mouth sores. The folic acid helps to alleviate that problem. If you're still getting mouth sores or sores on your tongue let your doctor know and he or she will up your dose of folic acid. I don't know if you know this but Methotrexate is actually a cancer drug when used at higher dosage.

9

I forgot to mention but there is an awesome group on here for PMR.

10

Oh thanks for your input amkoffee, it's greatly appreciated but one thing is definite and that is that I don't have PMR. I know this for a fact because I've previously been suspected of having Temporal Arteritis which, if you've got PMR, will know that this often goes hand in hand with PMR under the title of Giant Cell Arteritis. My ESR level has remained high since then in 2011. 

I had the tenderness and very slight swelling on my left temple but since a week of steroids made no improvement it was deemed that I didn't have the GCA which was a huge relief because that meant I didn't have to undergo the artery biopsy phew! The Rheumatologist I then saw decided that this was just another of my Fibromyalgia symptoms and as anybody with this will tell you, many of the symptoms overlap with other conditions which can prove very confusing when trying to make definite diagnoses.

​I've also had personal experience of somebody with PMR and that's my husband who was on steroids, Alendronic acid and Adcal for over 2 years before going into remission. My aches and pains are not like his at all since my muscles are just very tender to touch and he was in so much pain he was unable to raise his arms or legs at all when it was at it's most vicious before diagnosis.  He also had the girdle pain which he thought was just his osteoarthritis in his hips but it was part of the PMR. But thank you for your suggestion and I hope it'll prove useful to another sufferer.

​I do hope you've been fortunate enough to go into remission? Although we're prepared should it decide to rear it's ugly head once again. My hubby's been totally off of his steroids etc. for nearly 3 months so we're keeping our fingers crossed that it doesn't return anytime soon lol

Kind regards,

​Hippyginger

11

Ohhhhhh Nu2this, you are suffering poor lamb. I do feel for you.

​I'm only taking 4 Methotrexate tablets once a week amounting to 10mg in total and my Folic acid 5mg is also only to be taken once a week on the day following my Methotrexate but I shall wait to see if I have any of the unwanted side effects keeping my fingers crossed that I won't. Apparently the folic acid is given because it can lower the possibility of getting some of the more unpleasant side effects from the Methotrexate, so I live in hope lol

​I was also initially diagnosed with connective tissue disease but that diagnosis was made by my Neurologist who first suspected that I had either Lupus, (SLE), or the Sjogren's but the Rheumatologist gave the  definitive diagnosis of SS.

​Have to say, that since this was my first day taking the Methotrexate I did find it a bit of a kerfuffle because it's supposed to be taken either 1 hour before food or 1 and a half - 2hours after food. Trouble is I have to take my Omeprazole for my hiatus hernia first thing before anything else lol I ended up taking my Omeprazole, having my breakfast and setting the timer for 90 minutes so that I could then take the Methotrexate lol BUT then waited another hour before having lunch lol I'm sure this will get easier as the weeks go by and I've only realized today when checking my slip of paper the Rheumatologist gave me re my blood tests that I'm actually to have them fortnightly for 12 weeks not the 2 months I thought she's said lol But I do know for definite that after those 12 weeks, I then go to monthly blood tests for the duration of being on the Methotrexate. Quite a palaver but hey, if this does actually help my joint pain and swelling, I'll be content.

​I already suffer with Raynauds like symptoms in my fingers and toes but the doctors have already discounted Raynauds though thankfully I just try to make sure that I keep them warm at all times to void the worst of the pain.

​Thanks so much for your post Nu2this and good luck.

Kind regards,

Hippyginger

12

Oh I'm sorry you couldn't tolerate the Methotrexate, (hereafter to just be MTX for ease of typing lol), Tumtum1963, especially as it was doing your swollen bits so much good. I'm just curious to ask how long you managed to take it for if you don't mind?

​If this takes as long as the Hydroxychloroquine did to start taking effect, I shan't be holding my  breath lol

​As for the ESR AND CRP levels my Rheumatologist and GP both seem to be being guided by them and the only reason I know about them is because I used to be a nurse and being nosey is inbuilt with all things medical I'm afraid lol

​Thankfully, this is just a short sharp course of the Prednisolone and I certainly have no wish to be on them longer term because I've already had over 2 years of being on that blooming horrible Alendronic Acid, (even the name sounds toxic, which it is of course), that always seems to be prescribed for long term steroid use when my DEXA scan showed osteopenia and I hated that with a passion. Was never more relieved than when my next DEXA SCAN showed improvement in my bone density which meant I could stop the Alendronic acid once a week.

Hope your Mycophenalate is helping and thanks again for your response. I'm always concerned that nobody will reply when I do a post lol I'd hate to be a Billy-no-mates lol

Kind regards,

​Hippyginger

13

Ohhhhh Mandy, I too have lots of allergies, (10 at last count and I carry a card with me listing them all just incase they're ever needed lol). But I'm afraid I've had some of my allergies since childhood, they've just been added to due to my Fibromyalgia.

​I recently had surgery to excise a basal cell carcinoma, (hoping it WAS just that but still awaiting the pathology results), and the thing that had all the theatre staff raising their eyebrows was my allergy to.......SILK lol This was because when they remove the specimen, they do it with silk sutures and they said it was not a good idea to so that with my allergy because while it wouldn't then affect me, it may well cause problems on the specimen they were sending for pathology lol

​Then last week another of my allergies caused a minor hiccough for my Consultant Rheumatologist who wanted to give me a different medication before deciding on the Methotrexate BUT since it's one of the same Sulphonamide group, that was a no go.

​The worst most commonly encountered thing I'm allergic to though, is blooming Chilli!!!! I have to read the ingredients of sooooo many things I buy these days because you'd be amazed at how many foodstuffs end up with some form of chilli in, even desserts! Now that's JUST wrong! The funniest thing I've encountered so far when eating out was when I asked the waitress if something on the menu contained chilli. After checking with the chef, she came back and said, 'only a little chilli powder'! lol Hilarious. But I can definitely sympathise with you and your allergies Mandy.

​This is only my first day taking the Methotrexate so I'm naturally aware of any possible side effects but to be honest, it'll be tricky to pinpoint some of the potential side effects since many of those listed are also symptoms I have with the Fibro, SS and peripheral neuropathy anyway lol

​

Kind regards,

Hippyginger

14

Hi hippyginger,

When I took mtx it caused shortness of breath and I felt like I had run a marathon. So be aware. My RA said that my allergies were do to the Fibromyalgia.  My list of allergies is also getting longer.

Regards,

Mandy

15

Well that'll teach me to open my big mouth......poor hubby's PMR has returned!!!! I finally got him to see our GP 2 weeks ago because I could see his symptoms had returned especially the fatigue and he was avoiding doing certain things around the house and garden that he'd usually enjoy doing, (like decorating etc.). Our GP, agreed that his symptoms certainly did indicate that he was out of remission and put him straight back on to his steroids, Alendronic acid and adcal but he was to have blood tests to confirm his ESR and CRP were above normal levels before starting on the steroids, which he did before leaving the surgery. As if by magic, one 10mg of Prednisolone and 2 hours later he could once again lift his arms up and as the day went on, other bits also became more mobile! Oh how I wish there was such a magic formula for my Sjogren's and Fibromyalgia lol Hubby sees his Rheumatologist next month anyway but in the mean time our GP is intending to reduce his steroids to see what level he can have as a maintenance dose to keep him symptom free.

​I've now had 7 weeks of MTX and folic acid and so far.......dare I risk saying this.........I've not had too many unpleasant side effects since week 2. First week, 4 days after taking it I had awful trots, (4 times in half an hour kind of trots!), then the second week and once again 4 days after taking the MTX, I had a mahoosive mouth sore going the full length of my lower left back teeth but I've had a tendency towards mouth ulcers with the Sjogren's for ages. Maybe the folic acid is doing it's thing and keeping the worst of the unwanted side effects at bay? Long may that last I say lol

​I also saw my neurologist last week and she's now given me an open appointment so that if my neurological symptoms worsen or if I develop more of them, I can ring her secretary for another appointment and she's writing to my GP to suggest that I go on Gabapentin for the Fibro symptoms but I'm none too keen to start on that as it's currently being discussed as to whether or not it should be reclassified as a Class C Controlled Drug which means there is an addictive risk and having been addicted to 3 different prescribed analgesics before, I have nooooooo wish to ever have anything that has a risk of becoming addictive. One of the reason's it may be reclassified is also because of the 111 deaths in one year related to taking Gabapentin! 

I must say that I'm thankful to the neurologist though who was the first to suspect that I had Sjogren's and then the Rheumatologist confirmed it. If only it had been that simple and quick to get a diagnosis for my Fibromyalgia all those years ago instead of seeing 5 different Consultants, (an Opthalmologist, Cardiologist, Orthopaedic Surgeon as well as my Rheumatolgist) before my then, Rheumatologist casually mentioned that my new base of thumb pain was due to my Fibromyalgia! My response was, 'My what?' because for years he'd only ever told me that I had 'soft tissue rheumatism' which really explains the pain quite well I suppose and was obviously what Fibro was called before somebody was brave enough to name it and many other of it's symptoms as Fibromyalgia Syndrome lol All along I kept saying to my family that I felt as though I just wanted ONE specialist somewhere to look at the WHOLE me and say that I had X, Y or Z and that's what my Rheumatologist finally did lol

​Well peeps, I shall stick with this MTX stuff and hope for the best albeit so far the only bonus I've noticed is that my swelling on my hands is everso slightly less than it was before I started taking it, but then I don't really know if that's just because I've doubled up my Hydroxychloroquine. At least so far, my liver profile isn't showing any worrying levels, so let's hope that can last too lol

​Hope all of you in the UK are currently managing to keep warm with this 'Beast from the East' weather we're experiencing here brrrrrrrrr. Not helping all my aches and pains I have to say.