After 8 months of MTX my arthritis is pretty stable. But am now getting anxiety as I also take Hydroxychloroquine daily, Avamsys for my nasal bleeding; to cap it all Ramipril for newly diagnosed blood pressure.
I m stopping it all as the combination of side effects is too much. I ve had a spate of mouth ulcers, cold sores and bloodshot eyes over the last three months and have mentioned it to doctors but noone seens to take notice. The worst is the whole anxiety and mood altering i experience.i end up depressed and fearful with morbid thoughts about dying taking over.
Drs solution? Take these anti depressants.
I ve decided to stop all medication for now. Am on a crash diet to shift a stone or so and am joining a gym. Luckily am in Spain this week where its easy to do a gentle six or seven km walk once or twice a day to get things moving.
I ve my consultant next month and will let them know. Its as if the only person taking a holistic approach to my health is me.
Dunno if anyone else gets overwhelmed by medication..quantity, timings and dosage. Its all too much for me fornow.for now
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I can completely understand that sometimes you want to throw the whole bloody lot in the bin! Especially if you have got to a more stable place. It is (one of !) the real challenge of having a chronic disease, getting to the point where you can be peaceful with your disease management.
But it’s also very risky, stopping everything, you could quite quickly be back at square one. Also if you stop everything at once you won’t know which is responsible for which side effect. Does the nasal spray coincide with your anxiety for example, as it is a corticosteroid and they make me go totally loopy?
And are you on MTX pills or injections? As if pills then swapping to injections and upping folic acid can make a big difference to mouth ulcers.
I have been know to give myself a drug holiday, for a week, just as a breather. Not often, but when I feel I have to for one reason or another. But I never miss MTX for more than a week as I’m too terrified on it all getting out of control again. And if that helps you to take steps to reduce your blood pressure naturally then that’s brilliant.
I really think you need to talk this through with your doc. As there are alternatives to MTX if this is causing ulcers, and no patient should be left with unsupportable side effects.
Have a great holiday, relax, and then pick up the responsibility again when you get home.
Thats a good point on the Folic ..my right lower mouth has felt raw and off for about six or seven weeks
Things seem to have compounded since November..its fair to say that i d gotten to the stage where i d get up Monday take my mtx.. and due to fatigue would be in bed by 2pm. This "floppiness " and fog would last a couple of days. In the background a growing sense of anxiety and morbid thoughts as well as fear of sleep. I d had a string of colds as well which are debilitating
It all came to a head last week. Took my mtx. Took my ramipril. Took my hydroxychloroquine and felt light headed and tight in the chest. Honestly wanted to cry and lash out. I d used the nasal spray up until then as well.
So I decided then that the easiest way to deal with blood pressure is to shift a stone.
So came down to Spain on Monday. No drugs at all this week.and my mood is better already. I ll join my leisure centre next week and just get my miles on the treadmill done. I ll reintroduce MTX from following week. Am lucky here as its nearly 20 celsius so nice to be out in the fresh air. I ve written down my notes and will bring to the rheumatology appt in Feb .
Hiya Paul. You're not the first to want to throw all your meds in the bin, if you ask many of us old timers we could empathise) but think about it a minute, think back to when you were diagnosed, do you really think that's a place you want to be again? You're on holiday, most of us feel 'better' when we're on holiday but that's not your norm, it's a bliss break. The warmth of the sun alone can make us feel better, plus we're relaxed so we're bound to wonder if we need to keep taking these meds considering. Well, I'm afraid the answer for most of us is yes but you're in a relatively good position, if I explain. You have a Rheumy appointment coming up, be honest & explain as you have here (maybe another side effect has some bearing too?), your Rheumy could change your MTX tablets to injections, as well as increase your folic acid if you're still only taking them once weekly. It could make a big change in how well you tolerate MTX. There are other things that could be addressed with your Rheumy too.
I’ve an appointment & I have to go but pm me if you like, I’ll respond when I get back home.
I ve written down a list of points and concerns eg am on hydroxychloroquine and have not been offered an eye test yet reported soreness and bloodshotness.
At time of writing am lucky to be sitting in Benalmadena in Spain and its 18 in the sun, so who would nt feel good.
I ll reintroduce my mtx on Monday and ask for more folic acid. My partner has said the difference in my mood is incredible from two weeks ago.where i d become jumpy, anxious and paranoid.
Exactly my point, you’ve the sun, the warmth, no work so no stress... et al. Enjoy your hols, can't say I blame you, wish we could do the same. Friends from the Valencia area invited us over to have a winter break when we saw them here before Christmas but my h is waiting for an appointment for a lung capacity test & a stress test (resulting from his consultancy which was fast tracked after we'd accepted their invitation) so it's not possible just when we need to escape, typical.
Definitely add the eye problems to your bullet point list, & yes, you should have had a baseline test before or soon after starting HCQ & annually thereafter if the baseline test is normal, more regularly if not.
I do wish all Rheumys prescribed 5mg folic acid each day except MTX day. My Rheumy told me she does for all her patients on MTX. We excrete any excess when we pee so it doesn’t harm only makes good sense. Side effects of folate deficiency include irritability, feeling faint, mouth ulcers, psychological problems & fatigue. I'm sure there would be more people who'd remain on MTX if 30mg a week was the norm given it can deal with these more common side effects.
The anxiety/mood changes may or may not be helped by looking at your meds but certainly they do need discussion. Your lightheadedness may be a result of your ramipril, especially if you'd had alcohol around the same time you took it. I know when my h tried ramipril he did & was told to take it just before bed until he'd got used to it, this was without alcohol as he wasn’t drinking at the time.
I remember well being absolutely desperate because of the methotrexate side effects and feeling quite suicidal as I could not see a way out and the medical team were unhelpful and unsympathetic. I'm also on medication for hypertension. Changing to the injections, improved things enough for me to give it some more rational thought.
Then a consultation with the dentist who was horrified by the size and depth of my oral ulcers crystallized my decision to insist on a change in medication. I wasn't eligible for biologics so I'm now on azathioprine which suits me much better, although it still has some side effects (mainly gastro-intestinal hurry and nausea), but I'm coping with those. My family thought that I had pre-senile dementia when I was on the methotrexate - they are most relieved I'm back to my usual overactive mental state.
I would encourage you to record how you feel and take your record with you to your consultation and politely and firmly say that you cannot continue like this.
I found Hydroxychloroquine increased anxiety/sleeplessness & MTX really low mood. It’s worth saying to rheumatology if they’re making you miserable, mine were very good and we all tend to play side effects down. Always hard to know whether it’s the disease or drugs? Hope you get some answers & respite soon, enjoy your hols 😊x
Tnx for that. Hydroxychloroquine is a strange drug . The bloodshot eyes havent been ideal so thats top of my list for the consultant.. but its nice to feel normal todatt with no moods and fears
.and a mouth that i can eat thjngs with comfortably.
I hear what you are saying about the seemingly never ending adding to your daily medications, the possible sensitivity you have to some of the meds, the unknown interactions and the iatrogenic effects of the meds.
All of the above are much more commonplace than Drs and pharmaceutical companies will admit too, know or understand.
But, as others have said on your thread, stopping a medicine regime without discussion of what you really need to help you function is probably not wise. Particularly if MTX if it is helping your RD.
My GPs reaction to my climbing cholesterol rate was to introduce statins to my ever increasing drug cabinet. It's easy to sign a prescription.
I refused. 3 months later I talked it over with the biologics consultant who said very strongly that she thought I made the correct decision. My BP is well controlled, I'm losing weight , my mobility is improving and she completed the paperwork at my appointment with her for a health programme for people with RD. There are other ways than the prescription pad to help you once the RD is controlled.
I keep a daily journal, it takes less than 90 secs to do each evening and is one of the main reasons my care improved. Write it down, take it with you to appointments, be clear, be succinct, be polite but assertive about your issues. Don't be fobbed off.
Enjoy your break in the sun and come back ready for good RD care.
I had an unpleasant reaction to hydroxy too. Developed tinnitus, had dreadful nightmares and started feeling anxious - not at all ‘me’ - I’m usually very pragmatic , sensible and positive - Mrs Boring in fact. Stopped when I stopped the hydroxy though Im left with a lower level of tinnitus.
Perhaps best to give one thing up at a time or you wont know whats causing what.
RA pain & inflammation changes brain chemistry & can cause anxiety & depression. The meds can also do this, so it is difficult to tell what causes one thing or another or both. I am going thru this as well. It is very upsetting. Reintroducing the meds one at a time & increasing folic acid sounds like a good plan. May need to get a more diligent & helpful rheum.
The fact is that doctors themselves are not aware how the meds interact. Often symptoms and meds are just separated until without checking and given enough time to reflect upon from the docs side. As the pile of pills grows the body finally gets overwhelmed, as well as the doc.
Have you had the pneumonia vaccine? I had it a couple of years ago and I have less chesty coughs and minor bronchitis events since - it lasts 5 years I think.
I have med breaks particularly if there are bugs going around my class (I teach special needs youngsters) and it usually goes 1 week 1/2 meds, 1 week no meds, 1 week 1/2 meds and then back to normal. My rheumy and GP know I do this and we tried to drop my meds permanently from 20mg but once on regular 12.5mg a week it was fatigue and aches again so back to 15mg steady which seems to be my optimum dose right now.
I know what you mean about the lifting effect of warmth and walking as we spent 2 weeks over Xmas just down the coast at Fuengirola- strolling, swimming, reading etc and I felt so much better for it.
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