NRAS
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Not in a good place

Happy New Year guys. Hope you all had a great time with your loved ones.

Me, I was in bed for 10pm with the usual feeling of sickness.

So after being told that MTX is doing great for the condition, but having an adverse effect on the rest of me making me feel bleugh all the time, no appetite, low mood and generally locking myself away from and social events and lack of sleep. It was decided to change me over to the injections which I've been on for over 6 weeks now. There is no change in how I feel and my GP has now put me on anti depressants now.

Im also going through the menopause which I guess isnt helping.

Right now I feel like im living someone elses life as this is not me. Im so fed up with feeling unwell and believe me ive tried so hard to spin this onto a positive, but its just not happening and I dont know what to do.

Have any of you experienced this or have any advice on what I need to do to start feeling better. My whole life has changed and not for the better.

I deeply apologise for this rant on NY day, but its like im giving up and I cant be that person.

Any advice is welcome xx

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I thought given the sickness symptoms your Rheumatology consultant or nurse would of suggested you take anti sickness tablets to start with - possibly you would not need to take antidepressants.

I was put on anti sickness tablets they got changed to another kind because of side effects, which work well for me taken only when needed. Although my sickness might of been from methotrexate could now also be related to being diagnosed recently with Coeliac disease.

Sending you hugs and warm love

Pamela xx

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My GP put me on Omeprazole for the sickness and it made a difference to start with, but now I'm lucky to have one good day all week. I see my actual RA doctor on 26th for the first time since being diagnosed. I'm worried though as I'm due to increase to 20mg, I'm on 15mg just now.

I'm so sorry to see you now have another condition to deal with on top of RA and I truly hope you manage well adjusting.

If only we had a magic wand xx

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I am on Lansoprazole 30mg daily which is similar to what you are taking, which is to line / protect the stomach from ulcers from medication which is not for the nausea / sickness which is completely different.

I am surprised you have not been offered that help, also they should if haven't checked your Vitamin D levels.

The first lot of anti sickness tablets had side effects but they changed to which they give to cancer patients which dont have any or hardly any which I found better. Hospitals do tend to try on cheapest drug first as everyone's reacts differently.

I have been on Methotrexate for a year now 10mg also take Hydroxcholquine along with Celecoxib, Vitamin D twice a day, paracetamols along with Folic acid. Admittedly in the beginning I did have rather a lot of Steriod injections waiting for medication to kick in as Seropositve is quite aggressive but I am very happy with joints. Not sure whether will need a steriod injection if I go skiing as I wouldn't like to be away and suddenly fall not well with the pain.

Coeliac is also complete life changing, have adapted around 80% I will get there.

Sorry for waffling on

I wish you well

I really hope they listen to you when you see you Rheumatologist or nurse.

Sending big {hugs)

Pamela xxx

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.

Same things shared with Mags22 ( healthunlocked.com/nras/pos... ) is same thing ( healthunlocked.com/cure-art... ) shared with you, Angie2212. 😌

Agreed, there is no way to spin 🌀 such awfulness into a positive ➕.

It has to be dealt with ‘head on’ 🤜💥🤛 at its very root.

Wishing you & yours a much better 2018! 🙏 🍀 🌺 🌞

🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆

.

Oh, here’s "The Good Place": nbc.com/the-good-place?nbc=1 ☺️

.

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Angie your so not alone darling i know i am feeling like that and i also one other lovely lady who feels the same,we are all chronically ill so when all the festivities are over we will feel worse than during the holidays as we try to keep going and be of good cheer and now its all over we come down with a bang. Gentle hugs darling.xxxx

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I’m sorry to read that you’re having such a rough time of it. Obviously you’ll want to discuss your methotrexate side effects with rheumatologist but I’d also consider looking into hrt. My RA went into overdrive this year after nearly 13 years ticking over ok. This happened after I went into surgical menopause (had to have ovaries removed). Gynae referred me to a specialist menopause clinic in Oxford and I’ve felt so much better of late. I should also add that I’ve reduced my workload from 5 to 3 days, which has put me back in control of the fatigue (not completely removed unfortunately). I wish you all the best in finding a solution that works for you. Never apologise for ranting though, we understand! This disease has made me feel so angry and cheated at times, take care x

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Omeprazole will protect your stomach, but won't do much for nausea. Ask your GP for an anti-emetic. And if that doesn't help things in the next couple of week then when you see your rheumy ask about changing drugs completely. It's good to try to push through the effects of the drugs to see if they wear off, but there comes a point where you need to say enough!

My menopause also coincided with RA - it seems quite common. However the symptoms were horrendous so I ended up going for HRT. I decided that the very small risk was worth it for quality of life. Without it I think I too would have ended up on anti-depressants, sleeping pills, and higher doses of RA drugs. Anyway sympathy - it's rubbish to have both active at the same time. So do look into aids for menopause, natural ones can work well for some people too. Just avoid black cohoosh as that is contraindicated with methotrexate.

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Thank you for this advice.

My GP gave me the anti depressant to help with the menopausal symptoms. The night sweats mainly and low mood. I had been using natural remedies prior to that but they just stopped working after I started the MTX injection.

Its interesting you saying to avoid black cohoosh as im currently taking that and my GP never told me to stop. I will now though.

I will ask for the anti emetic to see if that helps but if not I'm certainly changing the meds. I can't go on like this. Although im pain free everyday is a struggle for me.

I appreciate this advice.

Happy New Year xx

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Well do double check, but my info says not to take black cohoosh with any other supplements or drugs that are hepatoxic - like MTX.

Hope you find a solution.

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When I had my FSH test results back & I was discussing with my GP whether HRT was an option I decided no. I was told point blank not to try black cohosh with the meds I take (one being MTX, my GP is hot on RD & the meds I'm prescribed) so I'd have a read up here drugs.com/drug-interactions... & see if your symptoms are possibly related to interactions with any of your other meds too. It's easy to blame meds as they're so often the problem but because supplements are considered 'safe' by some we don't think to investigate their side effects, particularly the ones with our meds. They're not necessarily safe, we need to be extra careful & before considering ask advice.

I'd definitely ask for an antiemetic with having nausea, unless it eases off if you decide to see if the black cohosh is the cause of some of your problems. Omeprazole isn't intended as an anti sickness med it's a proton pump inhibitor, it helps reduce acidity in the tum to ease reflux, helps protect the tum from ulcers & such.

Sorry to butt in but thought my experience might help.

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Thank you for this.

I have now checked the interactions and it displays Omeprazole as being red meaning it has high interaction with MTX. My doctor has me on this and my RA nurse said it was ok. I'm so confused now incase I'm actually causing myself to be ill. I also take Elite Greens but I can't find it listed anywhere. Its a natural pill full of everything green.

Am I just getting paranoid now. X

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A lot of us take omeprazole with MTX. There is the ideal world, where you avoid all possible problems, and then there's RA world where you sometimes end up with the least worst option. For most of us omeprazole (or other PPIs) and ok with MTX, and far less risky than not protecting our stomachs at all, but for a few people they don't get on with that combination.

I trust my rheumy and she is fine with it, as long as I don't have problems. Same with taking NSAIDs, which in an ideal world you wouldn't, or simvastatin.... the list goes on.

But since you are having problems perhaps you need to test out what is causing them. Talk to the doctors about ho best to do that.

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I doubt it's the omeprazole, this is why your doctor & nurse are ok with it. I've been on MTX 8 years & omeprazole 9 years with no issues whatsoever. Many, many of us are coprescribed the two, the same with NSAIDs, usually why we take ppi's like omeprazole. There are rules for those who have RD & those that don't! It's weighing up necessity against possible damage for us. What I'd do is list everything you take, including herbal supplements, & doses of each & ask either your Rheumy, nurse, GP or pharmacist to go through them with you for possible interactions. Sometimes unless you have an annual med review meds can be prescribed either by your GP or Rheumy (or we can choose to add supplements known or unknown to our medics) & can contradict. I have one each year with my Pharmacist but as my GP is so on top of my meds they've always been fine & not needed any altering.

No, you're not paranoid you're learning about the intricacies of RD.

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I am reading such excellent responses to the issue of side effects and protecting the stomach, etc. Just from my own experience over the past 50 plus yrs., you must protect the stomach and check out any and all supplements you are taking. I had liver failure after taking an herb to sleep - Valarien. Doctors were not sure what caused my problems, however, we with RA need treatments and there is known negative reactions to even what is labeled "natural." If you have a Rheumatologist you trust, then always get to talk directly with him or her to check out whatever you are dealing with. Here in the US I know our health care system is different and it seems patients in UK have to wait for appointments with a nurse or a clinic. I wonder how does one become an advocate in that system - (socialized medicine?). There must be a way to be seen more regularly when having flares, etc. Just curious about this. Happy New Year all and hope for a breakthrough cure maybe for autoimmune disorders.

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Seems we're singing from the same hymn sheet dryan.

My h had an experience with valerian. We used to live in Spain where the markets sell loose herbs. He was very busy at work & finding it hard to switch off when he eventually came home & so not sleeping well. He bought a 'tea' intended to aid sleep but it made him very anxious & nervous, not at all himself & most concerning. As it was a mix of herbs & just in a paper bag I went to the next market where I knew this herb man would be & asked what the ingredients were. He listed them all, one was valerian, & I was told he should shake the mix before taking out a spoonful to make the tea, the reason being it settles to the bottom. My h swore he wasn't told that, but anyway it was as he got to the bottom of the mix that the valerian was most concentrated because he'd not been mixing it. Never again, nothing with valerian in it, even properly prepared products.

The majority of us have a direct helpline to our Rheumy nurses, mine is an answerphone but my call is returned the same day or latest the next morning. I can get in to see her if need be, they'll fit me in quickly. Personally I'm also fortunate that my GP is well clued up up on RD, she's made it her mission! As such I'm well catered for. That's not to say if there's something she's unsure of or doesn't know she won't email my Rheumy to check because she will & has. Also if there's anything I need answering quickly re advice on meds, side effects & such, I ask the Pharmacist at my chemists. She like others are more than qualified to do so with any meds. So, there are ways & means, we need to be our own advocates, I think that's the difference. Where the NHS fails with Rheumatology generally speaking is diagnosing early. It's such an overworked department the guidelines for diagnosis aren't always adhered to, or rather can't be because of pressures of daily clinics. That we have no control over except if we start the ball rolling by seeing a Consulant privately but not everyone has the means to do that, nor should it have to be that way but that's the way it is.

I second your thoughts for a breakthrough for a cure, it's my hope we'll see it before I toddle off!

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So nice to hear right back from you. Yes, the Valarian root was something I took in tablet form and I swear it was toxic to my liver (I read afterwards that it can be), anyhow, the doctors said they doubted that was the case, but I have taken several biologics over the yrs. for the RA but never had elevated liver enzymes. They say now I have autoimmune hepatitis. I avoided a transplant, although it was a very scary 7 weeks in the hospital with liver failure. I am taking an imune supressant, Cellcept now for almost 3 yrs. It helps the RA as well. I find it so interesting to see how health care works in other countries. I have been involved in health care for my whole working career. We in the US always worry about socialized medicine, but I see from your response that it can in fact work well. Our health care system now is a mess. We need all the advice we can get. It sounds as if you are a very good advocate and know your needs. I have met some wonderful doctors over the years who do care and go the extra mile. It can be tough to fine them, but I have seen that if you establish that positive relationship with a nurse or physician it makes all the difference.

I also want to say I was in England just once and really loved it. I also love the Royal Family you have. Maybe one day I can return and go to a conference or meeting with the group NRAS.

Hope you are doing well yourself, Best to you,

Dorothy.

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Hi Angie, know how you feel, did long post on methotrexate myself, seems like cure is worse than disease sometimes. I would say to rheumatology or help line it's making you sick and miserable all week. I did. I'm metoject too, little difference, but they dropped me from 20 mg to 12.5 mg and put in hydroxychloroquine to make up gap (not quinoric, makes you queasy too but coated enteric, zentiva i think). I'm also on cyclizine, anti nausea, helps a bit. Not medical advice, I'm not a doctor. I wish there were drug for this that didn't have horrible side effects too. Kind regards.

K

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Hi Angie I'm exactly the same . Was on Mx tablets but felt dreadful so changed to injections 6 weeks ago and I don't think they're doing anything for me apart from making me feel sick, lethargic and very unsociable. Going from being very independent and always on the go to a recluse constantly in pain is a total life change . Unless your in this situation it's hard to understand. People think your being miserable when in fact your in constant pain and can't be bothered . I'm changing my diet from today to see if that helps. I'm also going through menopause and have ulcerative colitis to contend with . But onwards and upwards to a better life . At this moment just one day pain free would be amazing... your not alone and this site is here even if u need a rant or a moan as we're all in the same boat ..... hope u feeel better soon x

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Hello Angie, Not nice at all to be in the bad place shared by so many of us☹️Had a thought about the hormonal imbalance situation that may very well be one of the factors contributing to your feeling rotten. There are natural ways to grapple this. Here is an interview of a very knowledgeable scientist on the subject, that may be of help.

blogtalkradio.com/eastwesth...

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I listend to the whole interview that was really loooong but very much worth it. Learning to understand the effects of hormons and HRT seemes to be so essential when planning treatment strategies. Feels so much better when we understand how the treatment is supporting our bodies, longterm. The role of progesterone is so very essential in our wellbeing and still we are seldom given information on this. An other example seems to be how we see estrogen that is in fact very bad for us when in excess and without the counterbalancing effect of progesterone. Really interesting information👍🏻😊

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Hi,

I completely understand how you feel. I’m so sorry you feel like this.

MTX made me feel crap... to the point I didn’t want to leave the house or even talk to anyone.

If it’s effecting you please speak to your rheumatologist. Even if it is doing amazing things for your joints, you have to feel good in yourself too. There are loads of other treatments. I’m on a biologic injection and it has completely changed my life.

I really hope this gets sorted for you. Have you tried yoga? That really helps, it also helps your joints to not feel stiff.

Lots of love and well wishes xxx

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Yes, unfortunately. My nausea got much worse when I changed to injections but after 5 months of severe nausea, loss of appetite, big weight loss, feeling so unwell and severe abdominal pain, I was diagnosed with adrenal failure. I’ve stopped MTX ( rheumatologist told me to after 6 weeks of feeling so ill) and now taking hydrocortisone for life. Feeling so much better than I was but being diagnosed with yet another disorder which can potentially cause crisis, coma and death has been really scary.

Clemmie

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Yes. I've been there, and I'm not out of trouble totally. I've had to drop out of med school due to problems similar to yours. And I was almost finished. And I left a secure job at the FBI to do this. Now I have nothing but debt, an uncertain future, and fear. So I know what you are going through in general.

Pray, stay close to God, and do not take your life. I believe you will find relief. I hope it comes soon.

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I feel nauseas at time of Mxt and next couple of days following it. I’m on injections now for 17 months . I take anti emetic before and couple of days after mxt dose.

I say mxt makes me ill but HP seem to ignore it. My bloods are usually ok with the occasional rise in ALT at times.

Now they want me to change my hours around to shorter days over 4 days which will mess up MXT day so will be unwell all over the weekend so great no weekends now.

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hi sorry you are finding side effects on metho hard to deal with. im same but i usually find if i drink plenty fluids and eat a lot even tho i feel sick, i find it helps. i feel sick just looking at the box on the day i take it. anti sickness tablets will help but prob make you drowsy . on the up side tho it has cleared my psoritic arthritis so i guess it outweighs the side effects. you can always try other meds if you cant tolerate it. i wish you all the best of luck honey as i does change your life. take care xx

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I too feel sick looking at the box

I drink copious amounts of water so much so I’m swimming in it. It makes no difference at all. My RA isn’t controlled yet so not complete control.

Been to work today my wrists are very painful as hand write all day. Tried to get a hand held device but not allowed.

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Dear Angie I feel for you. Firstly I had a full hysterectomy so have hrt patches to avoid pills and stomach problems. Then methotrexate by injection for the same reason. When I have nausea my rheumy gave me Prescription for domperidone tabs which are brilliant.hope some or any of this might help. Hope 2018 can be a better year for all of us.

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Hi, poor you! I totally relate to what you’re saying. I had a dreadful time on methotrexate. Like you it helped my condition but I felt awful, anxious and very low. I came off it after about 6wks and was given sulphasalazine by my rheumatologist. I them decided to take a break from heavy meds but was still on steroids and naproxen. Once the pain started to return after a few weeks I went on to the sulphasalazine with a very positive attitude, this was going to work! Unfortunately it was exactly the same as methotrexate, in fact it was worse. It was a dreadful experience, high anxiety and was very frightening.

I am now on hydroxichloroquine and it seems to be working with no ill effects altho I’m steering clear of alcohol as the two don’t seem to mix.

You shouldn’t have to put up with feeling so bad, it’s no sort of life. The GP I saw said that the anxiety was not a side effect of the meds which I thought was rubbish. The timing fitted and I felt dreadful! Like you I didn’t feel like me, it was very upsetting.

Sorry to ramble on but I really hope you find the right medication. I sometimes feel like I’m choosing between being in pain or feeling very mentally unwell. Not a great place to be!

Good luck x

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Maybe MTX is not suitable for you. Will doc let you try something else. I couldn't take MTX. Anti depressants is not a good solution.

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Jobslot here feeling just the same as you I have OA along side depression been on citalopram for years and felt great but towards end of last summer not as efficient, so doc changed to mirtazapine and insured me they were the right tabs for me and still waiting to feel good . This is not much help for you Angie but for me I feel not as alone .

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Hi Angie, just wondered if you tried looking into B12, B6 goods for moods. Do check with your Dr. All the best.

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Hi. Im sorry you are in this position and have nothing to add as the lovely people on this site have shared, but I will say im on shed loads of meds as many are and so much is going on personally that im really struggling emitionally. Not sure how much more I can take....so im just saying I understand and you are not on your own as you can see by the replies on here. Use us, family,friends,medics anyone that you feel can support you, let them.

Take care and let us know how you get on.

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