Newbie (but not to RA)

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River
River Member Posts: 16
edited 16. Feb 2018, 10:53 in Living with Arthritis archive
Hello, I have just signed up here and have yet to learn my way around or get to 'know' anyone. Hope that happens sometime!

I was diagnosed with rheumatoid arthritis way back in 1999. In the early days/years I did loads of research and was determined to try to control the RA with means other than conventional medication and surgery. I tried all sorts --nutritional approaches, shiatsu, Chinese herbs-- some of which helped a little but didn't stop things getting worse in the long term. Then I did go on some medication: naproxen, co-codamol, and also had steroid injections, and then had two knee replacements in 2011. But I still resisted DMARDS, as I was very afraid of what I'd read about side effects, possible organ damage, and suppressing the body's immune system.

Then this past September the RA moved into my hip, where it ha never been before (since the knee replacements, it was mostly in my feet and ankles, and shoulder). The pain had never been so bad, I could barely move and in the mornings it took me literally hours to go from bed to being able to leave the house. My GP re-referred me to rheumatology (I had sort of fallen off the radar as things had been fairly stable and I didn't want more meds) but it took ages to get an appointment. Meanwhile they were investigating my weight loss and anaemia in case it was anything life-threatening (ie cancer-- doesn't seem to be, touch wood).

In the meantime my GP prescribed MST (slow-release morphine) --an absolute god-send-- and prednisolone, and the pain has decreased quite a bit (before that I was on tramadol which did nothing for me).

I finally saw the rheumatologist in January and was recommended methotrexate and I agreed to try it out, despite a lot of mixed feelings including irrationally feeling like a failure for not being able to cope without these harder drugs.

On another forum (which turned out to be very quiet so I found this one as well) there are a lot of mixed experiences with methotrexate so we shall see what happens. It's early days and I have noticed no reaction at all so far, either positive or negative, but I am told it will take at least three months for any benefit to kick in. At least I haven't had any of the nausea, diarrhoea, vomiting etc (so far) that I gather some people get straight after starting on this drug.

I do have a question about the medication, would it be better to ask it in the 'living with arthritis' section? Anyway thanks for 'listening' and sorry to be so long-winded.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello River

    Welcome to the forum from all the moderators, I do hope you feel you have much more information and support on this forum.

    Sorry to hear of all your problems re Rheumatoid Arthritis, plus the many associated areas of which it has affected you. The joint replacements and medications are very complex and affect people differently, may I suggest re-posting this on the Living with Arthritis section of the forum where I'm sure you will get some good support from our forum users. Enjoy the forum and please contact the moderators should require any support.

    John
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Hello River and welcome from me, too.

    You seem to have paid a heavy price for staying off the DMARDS and I'm sorry to read that. I, too, didn't have them when I was first diagnosed but that was because, in 1961, they weren't on offer. I did hold out for 20 years, though, on just anti-inflammatories before getting my new knees.

    As you have sadly discovered, diet and herbal medicines alone won't do much for RA. I wonder if you know why we are prescribed immuno-suppresant drugs. It's because our immune systems are faulty. They attack our own body cells not just 'foreign invaders'. That's why its essential to dampen them down. I can see that it's a scary idea, though, if you're not used to such things. By the time I was offered methotrexate I'd have taken anything. My only decent joints are those which have been replaced.

    I guess we're a bit different. I have no problem with taking methotrexate. I've been on a combination of that and hydroxychloroquine for about 18 years. I have my regular blood tests and my annual flu jab. I try to steer clear of people with colds / illnesses but of course one can't totally. (I always use the alcohol gel in doctor's surgeries and hospitals where lots of germs abound.) What would really scare me would be regular opioids, such as morphine, and steroids. Plus the damage that RA can do to internal organs if unchecked.

    I'm sorry about the anaemia. RA can cause that too but, to be fair, so can DMARDS. I was vegetarian for years not by any aversion to eating animals but just because my joints felt better without meat and I don't much like it anyway. However, my iron levels kept slipping below the danger mark (We knew, thanks to the methotrexate blood tests) and twice I was sent for endoscopies and colonoscopies. All was well so I was just given a course of iron tablets but, after the second time, I decided to eat a little meat regularly and the blood tests have been fine since.

    You talk of another forum. Please bear in mind that forums such as that and this one are weighted in favour of those who are having problems so it's easy to think many, if not most, people do. Actually most people don't and so they don't come onto forums they just get on with living.

    I hope you'll get some benefit from the methotrexate but sometimes the first medication we try doesn't work and others have to be added or changed to.

    Do put any questions you have on the Living With Arthritis forum as more people look on there.

    And PLEASE DON'T feel 'like a failure for not being able to cope without these harder drugs'. You can't. None of us can. You have learned the hard way, bitten the bullet and done the sensible thing. Be proud of yourself.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi River,

    Moving your post to the Living with Arthritis forum

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I began psoriatic arthritis in 1997 but wasn't accurately diagnosed until 2006. I began my first DMARDs back in 2002 (with no qualms whatsoever due to being on daily medication from the age of twelve thanks to other auto-immune nonsense) but it was too little and too late. Thanks to the joint damage caused by the PsA osteo moved in, which was diagnosed in 2011. Some joints have one, some the other and others both. I am positive that if I had begun the meds earlier I would not be in the pickle I am now: the PsA is well-controlled but of course those meds do nothing for the OA. I have a friend with PsA who is very controlled (and has been for many years) on just six sulphasalazine tablets per day, is still in full-time work and playing sport.

    I have been taking methotrexate by injection since 2007 and have no trouble with it whatsoever, apart from feeling extra tired every now and again. I also take humira (an anti-TNF). I rarely catch infections but have to admit that I am currently laid low by flu, despite having had an annual flu jab: this is the first time ever in over thirty years so that's not bad. Due to one med reacting badly with me I took oral steroids for three years - oh boy were they lovely! - but when a DEXA scan revealed my bones had started to thin (steroids work by thinning all body tissue, including muscle) I came off them, reasoning I had enough medical dross on my plate without adding osteoporosis, breathing troubles and possible heart-failure. Another scan after eighteen clear months showed my bones were recovering.

    I was born with auto-immune issues and am used to medications improving the quality of my life because they do. Auto-immune arthritis remains an incurable disease and making the best of what we have is important. The meds and walking aids enable me to still get out and about, see friends and do stuff. Would I prefer not to take them? Of course, but I understand that unless my over-active immune system is controlled my body will continue to attack itself, causing me much more pain and distress than it already does.

    Any form of arthritis is degenerative and progressive but, as my friend shows, that process can be slowed thanks to the meds. I far prefer life with them, I had a taste of life without and never again. My biggest regret is not starting them sooner but why waste time with regrets? I have a faulty immune system and only the meds can affect what it does to my body. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Hi River and welcome. As Sticky says, forums such as this can give a false picture of the extent of drug and disease effects.It's also worth bearing in mind that not only do drug companies have to disclose all side effects where known, which can make for scary patient information leaflets/googling(and the internet is full of cut and pasted misinformation and plain bad science - opinions of the ignorant or vested interests masquerading as fact), but also that drugs may be used for several different conditions. Something that's used for cancer treatment will be a higher dosages and on patients who are often already very ill so side effects are just about inevitable and likely to be more severe. That doesn't translate meaningfully to RA treatment regimes, hence why many people either don't have problems or they settle after a while or they don't find them intolerable. It's a balancing act - the RA will cause harm to your body, the drugs may cause problems but if they work will have a beneficial effect on the progress of the RA.
    As with many other medications(eg hormone, blood pressure) there is an element of trial and error to find what suits in terms of drug(s) and dosage.
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Thank you to John and Yvonne for the welcome and for moving my post to the appropriate section of the forum, and thank you to Stickywicket, dreamdaisy and daffy2 for your replies and sharing some of your own experiences.

    I suppose I don't regret the way I have approached my RA up until now, as in my view and experience some 'alternative' treatments can help up to a point. For example, for a time I went to a Chinese herbalist who was medically qualified both in the UK and in China, and the improvement in my knees (this was pre-knee replacements) was pretty dramatic. Unfortunately I had to stop going to him as it was very expensive. My knees then got worse, and by the time I started back on the herbs they didn't help anymore. So then I had the knee replacements, but apart from that, things have been fairly stable for a long time, as I said, until very recently.

    Somebody in the other forum I mentioned who had followed a similar route to me posted (years ago, it was a veeeerrry slow moving thread) that ""Looking back I think trying natural was a positive move, and taking the MTX was also a positive move. " That's how I'd like to think about it for me rather than regretting it. Thank you Stickywicket for saying I should be proud of myself for going on the methotrexate, that is lovely and very kind. I'll try!

    I do hope it's not too late for the methotrexate to have any effect, as you say about your own experience, dreamdaisy. I think it probably won't help my hip because there is damage already shown by the xray (the rheumy mentioned a possible hip replacement in future but I think not until my skyrocketing inflammation levels are down). Maybe it will help the pain in my feet though, and maybe it will prevent any other joints getting so bad, so very quickly, as my hip did in just a matter of weeks in the autumn.

    I understand the reason for immuno-suppressant drugs but do find it a scary concept because of course the immune system does a lot of good as well as attacking our joints. I don't get colds/flu/infections much and maybe that's down to an active (and indeed over-active) immune system. I have read that there is one set of proteins, cytokines, that are overproduced in people with RA, causing inflammation, but these same proteins protect the body against infections and also cancers and other tumours. So it seems to me a risky business to tamper with something like that....

    However I have made my decision to try this route and see what happens. I am glad they monitor patients so closely with blood tests (every 2 weeks to start with, in my case at least) and will be able to pick up anything that may go wrong, and adjust the treatment accordingly.

    Very good points above a) about how ALL the side effects of medications have to be mentioned and b) how it tends to be people with problems, not those sailing along happily, who post on forums looking for support. So you get a skewed view. (I posted on a joint-replacement forum around the time of my operations but don't want to go back there now as I would rather leave those particular experiences behind. So my successful new knees are unadvertised there.)

    This is getting long again, I have a question but will post it in the next post. But thank you for the replies and support, I am very glad I found this forum.
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    My question is about folic acid. I was initially prescribed one 5 mg tablet of folic acid six days a week, every day except the day I take the methotrexate. The rheumatologist explained (and I saw this confirmed online) that this was to help mitigate any side effects of the methotrexate, and I was reassured, because of my fear of these possible side effects.

    But when I rang up for a new prescription after 3 weeks, as instructed, I was now to take only one tablet of folic acid ONE day a week. I rang up to check this was correct, which it is.

    On the other forum I saw posts from people who were on folic acid with methotrexate both one day, and six days a week (nobody was on anything in between, for some reason). I just wonder why the dosage would have been reduced like this (and not gradually, either). I hadn't seen the rheumy again in the meantime but perhaps it was because my blood test results hadn't shown any ill effects?

    It makes me a bit nervous because of my side-effect-phobia. I don't have another appointment until April but would quite like to understand the reason for this. Does anyone have any ideas please? Thanks in advance...
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    There are people on here who take a varying amount of FA but, as has been pointed out, those who are doing OK don't need a forum and others don't feel the need to detail every little thing (sometimes it's hard to maintain interest especially when feeling rough oneself). Everyone's case and situation is different, there are no rules or norms, we can only answer questions about meds, supplements or dosages based on our experiences, not advise what someone should be doing. When I began meth one person thought another one had sorted the FA, I went for years without and no-one noticed because all was well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Medicine isn't an exact science, and is also subject to opinion same as everything else. Differences in medication regimes may simply be the result of what is favoured by a particular person or body(such as CCG). Whether that is the best for the individual patient is another matter of course...You would need to speak to those qualified/knowledgeable enough to answer your concerns, which would be the rheumatology dept I assume.A pharmacist may be able to help in the first instance, not least because s/he will know what the prescribing practice is in your area.
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Thank you for the replies.Yes of course everyone is different, I just wondered what the rationale might be for this reduction... daffy2 I hadn't thought of differences possibly being to do with a person or body's particular preference. I suppose I could ring the rheumatology department for information as you suggest, or speak to a pharmacist, or just wait (unless any problems arise) until I'm due to see the rheumatologist in April.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Folic acid does seem to be a vary varied thing. It's given to mitigate against the side effects of meth which (I think, but don't take my word on this) can deplete our bodies' natural folic acid.

    I've been on meth for about 18 years. I was always told to take two per week - one the day after my meth and the other three days later. I've never had any problems.

    But I know that many others are only told to take one per week and others still take them every day except meth day. i do sometimes wonder if a diet rich in folates means we are less likely to need folic acid. I love my green veg, legumes, fruit etc so that might help me.

    In your shoes I think I'd have a natter with a pharmacist. They're very good on that sort of info.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Googling 'folic acid with DMARDS' comes up with some useful(if rather technical) items. The quote below seems to be a good summing up of the situation.

    John Hopkins Arthritis Center:-
    "The immunosuppressive and toxic effects of methotrexate are due to the inhibition of an enzyme involved in the metabolism of folic acid, "
    in other words the way in which MTX works is positive for RA but negative for folates in the body, and it is that which causes side effects, some of which are serious(eg liver). Folic acid supplementation deals with those serious effects and also with the side effects that lead to patients giving up on the drug(although obviously in the latter case it doesn't always work well enough). The dosage regime seems to vary considerably both within and between countries, and may also depend on what form of supplementation is used - folic acid, or folinic acid(which seems to be a weekly option)
    My daughter has periodic episodes of problems with folates, leading to anaemia that doesn't respond to iron supplements(at one stage it was thought she might have pernicious anaemia). Since becoming part of Arthritisland(although not RA) I have occasionally wondered if individuals who might have a similar problem but not know about it may have more problems tolerating MTX than would otherwise be the case. Or is this something that can be/is tested for prior to starting the drug?
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Thanks both for these interesting replies. I've had a bit of a google as well and am just trying to understand what function folic acid/folates have in the body. And also what my anaemia might mean for how well I will deal with the methotrexate, and/or how much folic acid I will end up needing.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    The regular blood tests we get with DMARDS will show up any haemoglobin problems. When mine were very slowly getting below acceptable my rheumatologist told me RA can do that though he added that meth can too :roll:

    He would have simply given me a course of iron tablets but my GP wanted to be sure there was no bleed anywhere so an endoscopy and colonoscopy followed. There was no bleed so I had a course of iron.

    This happened twice and I decided enough was enough so I began eating a small amount of meat regularly. I don't really like meat but, since then, I've had no problems with my bloods.

    It will be interesting (Well, for me: probably less so for you :wink: ) to see what happens when you take meth. If it's the RA causing the anaemia you might find the meth sorts that out too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    I think you are in that unsettling no man's land where answers aren't forthcoming, because the information as to your particular circumstances and reactions are not known yet. On the plus side, as you said earlier, you will be closely monitored and so if problems arise they will be picked up in good time. Having said that, if you do have particular concerns it's worth raising them with the medics, both to ensure that they are aware(errors and omissions can occur as we all know) and also so that you can(hopefully) get answers.
    Sticky has replied at the same time,so there's a bit of duplication here!
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Oh I'm definitely interested too!

    In my case it won't have been the methotrexate causing the anaemia since I've only just started on the meth (ooh am I on nickname terms with it already?!)l whereas the anaemia came up on blood tests some months ago. Like you I've had an endoscopy and colonoscopy, and am on iron tablets. The docs seem to have provisionally decided it's the RA causing the anaemia (and weight loss) but I think they're still not sure....but yes, you're right that if the anaemia goes away as a result of being on the methotrexate that would seem to indicate it is indeed a result of the RA.
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Daffy2 yes it is a bit unsettling, you're right (although not as bad as before Christmas when they were investigating whether the anaemia and weight loss might be due to a stomach or bowel cancer). But yes, I take comfort from the fact they are keeping an eye on things via the regular blood tests. Also despite not knowing whether I will be on this drug long-term or how it will affect me, for good or ill, it's kind of good to have made the decision to try it,rather than to still be agonising about it.

    I have a phone appointment with my GP next week, not having seen her since I saw the rheumatologist, so I will make sure she is up to speed and maybe also run the folic acid thing by her as well.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    it's kind of good to have made the decision to try it,rather than to still be agonising about it.
    I think that's a very important point. Making a major-health related decision, especially when you don't feel you have as much information as you need, can be very draining. Once the decision is made you can then get on with dealing with whatever it brings.
  • River
    River Member Posts: 16
    edited 30. Nov -1, 00:00
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    Yes, exactly.