Is 3 mg of prednisone daily, forever, safer than MTX? Can you be on prednisone forever?

Don't know what to think.,,I want MTX added to my sulfa and hydroxy meds....I am "So Done" with being told that my RA is mild as it slowly progresses....My hands have been severely swollen and painful for the last 6 months....I have never had problems with my knees...but guess what?...My knees are now swollen... I asked for MTX, to tell you the truth, I begged for it....My rheumy was stunned at how swollen my knees are....My rheumy has added on 3 mgs of prednisone a day and wants to reassess me on July 25th. He says that if I haven't reached remission by then, he will give me MTX. Does this sound normal to anyone else?

Thank you for any advice you can give me

Sue

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  • Hi. I don't advise staying on pred long term. Its a great way to help with bad flares but I stopped taking it when I realised what it can do to bones. I think you may well be put on meth but I think you have to show the right blood scores before they give it. I suffered a bit prior to getting it. I think they have their reasons but why can't they explain this to you? Grrr. Stay strong and keep asking for more pain relief other than steroids. Good luck. X

  • I was put on MXT straight away in diagnosis. I was informed first line option with nice guidelines then will add on as and when. I was given the option of prednisalone injection or tablets as short term to help ease symptoms as told can take a while for the MXT to kick in. I took the injection rather than tablets. Prednisalone are renown for weight gain and osteoporosis.

    I feel It depends on who is treating you.

    Prednisalone should help reduce the inflammation and 3mg is a very small dose too.

    Hope you feel better soon

  • I'd be a bit concerned that the pred would mask the symptoms and I'd ask the Rheumy that to avoid further delays

  • If your rheumy is not keen to give you Mtx, there must be a reason. I found it a rather nasty drug with side effects that forced me to come off it after 9 months, plus it wasn't effective. I've been on Pred for years and have side effects and it certainly isn't a great drug long term but 3mg for a few months isn't long term.

  • Hi suzannedale. I was put on MTX immediately when I saw the Rheumy, I've been on it since Dec 2014. I was given 3 Steroid shots at diagnosis, then the following 2 appts to cover the addition of hydrox, waiting for the meds to kick in. I was finally given pred in April last year when Sulpha was added in. I started on 30mg and followed a good regime of dropping weekly by 5mg until I was able to come off. Well, it took a while! I finally stopped taking my 3mg 5 weeks ago when I saw my Rheumy. He added in more Sulpha (now on Max dose of 3 DMARDS) and I explained I did not want to be on pred anymore. We discussed options and I chose to have a steroid shot to help tide me over and give me a gradual comedown! It's my belief that, now a days anyway, that pred is used short term and isn't used like your consultant is using. If you are still struggling and your DAS shows it, then another DMARD is added in eg Sulpha or MTX. Pred should be used to help tide over whilst RA drugs are starting to work etc. Even small doses affect our bodies, I noticed a huge difference between 4mg and 3mg, so if be asking for another DMARD instead of pred. You could phone the NRAS helpline for their opinion too. But I'd be asking more questions if it was me. Gentle hugs

  • As goldfinch says, 3mg for 3 months is not long term steroid use - so very low risk. But equally very bizarre! Has your rheumy explained at all the reluctance to prescribe MTX? Do you have lung problems perhaps? You certainly don't sound as if you have problems with alcohol which is another reason not to prescribe!

    I guess the guidelines in your country (Canada?) must be different from Europe. Generally here if very small signs then start on hydroxy or similar, but for any significant signs of disease activity then as you know MTX is the first choice drug.

    Personally I'd make sure I stopped the pred well before the next appointment so there was no masking effect. Possibly a painful option for you but sounds like this rheumy is ultra cautious so needs to be whacked over the head with symptoms.

  • I'm also from Canada and was given 10 mg MTX (4 tabs) to start, so it must be particular to the rheumatologist.

  • I don't know why he is reluctant to start me on MTX. He said with MTX you need to have regular blood tests and it is a bother as it could effect your liver and lungs. He says 3 mg of pred is a low enough dose not to effect your system.

    I haven't had a blood test since June 2014. The test claimed I was RF positive. I also have no lung problems or kidney problems.

    I see the other patients in his office and I know why he considers me mild...Then I think, maybe these patients were also considered mild at the begining....

    Of course steroids are going to mask the swellings and make it look like I'm in remission. That's why I'm so confused. I didn't think you could be on prednisone for life. I'm going to go and ask my GP for his advice. I will also ask him for a new referal to another rheumy. I need a second opinion.

    Thanks for the advice helixhelix. I think I'll take the pred to stop the swelling and pain for a few weeks and visit the rheumy with the prednisone out of my system. I want to try MTX.

    Take care

    Sue

  • What a weird rheumy! If you haven't had blood tests how does he know what your inflammation levels are, and so how active your disease is? Let alone whether you are anti-CCP positive. I hate to be ageist, being of a certain maturity myself, but is he a very, very old rheumy who trained in the days when treatments were limited to aspirin and an ice pack?

    And of course MTX could affect your liver and lungs, but so could uncontrolled RA for pity's sake! Managinf this disease is about finding the best compromise to suit you and your lifestyle.

    Can you also ask your GP to test your inflammation levels - before you start steroids - so you have some sort of benchmark even if not a true one as the anti-inflammatories will also mask things.

    And my wonderful rheumy's office does have some people in the waiting room who are obviously damaged, but a big majority of sprightly, sunny people who look completely normal & can get up out of a chair without wincing. So what is this man doing I wonder?

  • My rheumy is in his early 70's and works 2 days a week. It takes 6 to 8 months to see a new rheumy here in west coast of Canada. I will be asking my GP for a new referal to get a second opinion.

    That's a good idea to ask my GP for blood tests to find out my inflammation levels. since my rheumy has never given me one. The only way I know my inflammation levels are high is because of my pain and swollen hands and now knees.

    I don't like complaining about doctors, but I feel I'm not being looked after properly. I read peoples post about all the blood tests they have and I just assumed it's because they are on MTX. I am only on hydroxy and sulfa.

    My blood is boiling mad now because the reason he didn't put me on MTX yesterday was because "...all the blood work is a bother when you are on MTX..."

    Take care

    Sue

  • I've taken steroids on and off for 45 years. When I had a flare up, it was always "take a dose of steroids" which worked at reducing inflammation, but more recently my rheumatologist has been reluctant to increase them. I've currently been on 5mg since 2009 and despite not being able to walk at all on my left ankle, he only allowed an increase of 1mg, taking me to 6mg daily! This seems strange to me as they always used to be quite happy handing them out. IMO whilst it's better not to take them at all, being on a very low dose is better than having lots of inflammation as that has its problems and not just RA.

  • Hi. Prior to my RA diagnosis I was diagnosed with SLE over 25 years ago. They started me on a cocktail of drugs none of which had any affect on the pain and inflammation. My consultant at that time started me on a high dosage of prednisone and it helped a lot. Dosage was gradually reduce to 10mg daily . I stayed on this regime for a number of years managing to work and raise the children. I am now on 5 mg a day but self medicate with my doctors approval, in times when I have a flare. I also take calcium tablets to help my bones.

    Without prednisone I would not of had those good years it was a choice I made.

    It has not affected my weight at all. I now have a diagnosis of RA but that is a different story.

    3mg for 3 months is a very low dosage, it is not forever but if it is concerning you speak to the rheumy team. I cannot comment on it masking your symptoms I am unsure what level of dosage does that , I know from my own experience 5mg does not. But you are new on the drug so you could have a different experience.

    Smithfield.

    O

  • Hello Friend with the never ending supply of links and videos.

    So true devil drug for some or others a life saver. I can only speak for personal experience and what worked for me with the steriods.

    The alternative view on calcium raised a few hairs on the back of my neck.Personally I am not a diary food/drink fan .But I intend sharing that link with my daughter,

    Take Care and have a good day.

    Yes joined the Lupus forum dip into it now and again.

  • But I pop the calcium pills to counteract the prednisolone.!!!!!

  • Thank you Kai will pass it on . I think the pregnant cow bit hit me the most. We are constantly pumping milk into kids and she has an 8 year old daughter. I can share the link and let her make her own decisions.xx

  • Life or more to the point diet healthy or otherwise is so confusing . There was the article on the news last night and I have to admit to only catching half of it. So hope I am not guilty of misquoting But it seemed to be saying fats were good for you .I cannot cope with that argument.

    And yet my d.i law whom I love dearly follows a plant based diet grows her own seeds and takes it very seriously but advocates for red meat but absolutely no sugar.

    I just try to follow a healthy balanced diet.Without red meat.

    Farming or some farming of livestock to feed the demand of supermarkets and the antibiotics they are pumped with is one of my soap box subjects best avoided in public. But if you are raising a family on a tight budget what do you do.?

    One of the standing jokes in my family is every Christmas I pay my weight in gold for an organic free range turkey because I know it is not full of antibiotics and it has had at least had freedom and grass to run around on before it was killed.

    But I can afford to do that not everyone can

    You have got be going now Kai.

    X

  • Thank you for your advice Smthfield. I never knew that people can be on prednisone for years. My doctor wants me on them as an add on drug to my sulfa and hydroxy. If he only wanted me on them for 3 months I would be ok with that. It's the fact that he wants me on them for years is what is scaring me.

    I'm glad you were able to have little side effects and enjoy your life while on them

    All the best to you

    Sue

  • Have your CRP levels been constantly raised ?

  • I don't know Janeellen because the only blood test I had was 2 years ago. As I read people's posts I am aware that everyone seems to have blood tests all the time. I just figured everyone is on MTX.

    Do my bloods need to be monitored on sulfa and hydroxy?..I need to ask my GP.

  • Your CPR definitely needs checking ...without that no one can work out your DAS score ...see your GP for a blood test.

  • I am on hydroxy. And have monthly bloods taken to check CRP ESR and liver function.

    Regular blood tests help your medical team monitor your inflammation and to monitor how your liver is coping with the meds.

    Best Wishes.

    Smithfield.

    Thank you for your previous reply believe me everything is scary when you first start out.

  • Hydroxy is not generally monitored by blood tests (although annual eye tests are a must) but sulphasalazine should have some monitoring of liver function and blood count, particularly in first 6 months. After that it can be less regular.

    It's also good to have relatively regular checks of your inflammation levels, either ESR or CRP (or both!) to be able to track progress. In Europe the DAS (disease activity) score is used, but there are other methods. But you do need to have something to base it all on.

    I'm currently inbetween rheumies, and have a new GP who doesn't know a whole load about RA. Luckily she is open to a patient telling her what to do and what to prescribe! So hopefully yours will also be receptive. I do sometimes feel this is a self service disease.

  • Hi suzannedale

    What I am about to say is what I have been told by my consultant, I'm not saying it is the whole truth!

    If prednisone is the same strength as prednisolone (?) then your body 'should' provide the equivalent of about 5mg a day. When we are on corticosteroids for any length of time our body stops making it's own, which is why it is dangerous to stop it suddenly.

    A lot of people are on a maintenance dose of 5mg or under, and I'm told it shouldn't cause too many problems. The main concern is that you become unable to make your own and when you do come off it have problems. Hence folk being on a low-dose for long times, to compensate for their own compromised adrenal function.

    That is what I have been told, you might want to share your concerns with your doctor and see what they say.

    Ade

  • That is exactly the same info I have been given, over a long period of time it does stop your body making your own adrenal and it is especially important you tell the medics if you are admitted to hospital. Weaning off a high long term dosage should be a slow process.

  • Absolutely, I was on 5mg for some years, my consultant thought I might need to keep taking a maintenance dose, but I very, very slowly weaned myself off it and didn't have any problems.

    You can get 1mg prednisolone tablets so doing it slowly is pretty straightforward. Unless your adrenal gland is duff I guess. 😳

  • thanks for your advice Ade. Makes me think very hard about being on it forever.

  • Think you need to have a chat with your rheumy and try to understand the thinking behind their suggested meds.

    It may be they are doing it as a result of some tests you have had done that we are not privy to.

    Ade

  • My rheumy has never given me any tests to be private about. He just seems stunned that I'm not in remission.

  • No I didn't mean they were private to you (or us) just that we (you 😀) may not know all of your test results.

    When I was first ill they did so many different blood tests to try and find out what was going on I couldn't keep up. Not sure they told me every test result, although now I would be asking for everything written down!

    Ade

  • Excellent. It does not have to be forever not matter how long you have been taking them. My consultant is hoping to wean me off once I get started on the biologics .

    You can also get tablet cutters if you want to for example to slowly reduce from 10mg to 7.5. Using them has helped me lower my dosage over the years.

  • I have been on Prednisolone for over 30 years, it's not a scary as some people seem to think! I was on 20mg for around 10 years then came down to 5mg for about 15 years, now on 3mg and despite having tried to come off regularly it looks very much like I will be on a low dose for the rest of my life. I have regular scans and my bone density is normal. I have also been on hydroxychloroquine for about 25 years. I have been taking methotrexate now for about 5 years and I must admit it has helped me enormously but I was very reluctant to start it because I had read all about the possible side effects. However, you do what you have to in order to get on with your life.

    Good luck with everything and don't be afraid of the steroids.

    Fifi x

  • Hi suzannedale

    I was put on prednisone the first time I had the flare ups that is 2 years back. But it was only for a week basically only to bring down the inflammation. And that's it. After that uptil now I have been taking 15 mg. MTX. And I thought that was the normal procedure because it worked for me. Prednisone is a very heavy on side effects if taken for a long time.

    I would advise you to look for another rheumy just to have a second opinion. I hope you find another good one. Take care. Good luck.

  • I totally agree Kai we do not eat at the expensive end of the food chain I do not eat red meat at all and very little white.Mostly fish. Veg.fruit. pulses pasta is our staple diet. But once a year if I buy a turkey for the meat eaters I think what the hell.( I think I am being defensive here!!).😨😨

  • first of all you should stop the prednisolone reducing gradually,then the kidney liver and heart investigation needed. after that you consult a homoeopth and take homoeopathic medicines for the rheumatism and your joints swellings.thank you.

  • I think it's an unusual approach... There is a osteoporosis risk for people taking even low doses of steroids. It rises steeply soon after people start taking them, and falls again after they come off - so the risk is there even with short term use. This report is pretty comprehensive: nos.org.uk/NetCommunity/Doc... But of course there are risks with MTX too. I'm not sure whether anyone has weighed up one set of risks against the other. But my rheumy team did say they wouldn't prescribe steroids for me, and they have prescribed MTX...

  • Don't stay on the steroids for long if you can help it darling. I am sending you a lot of gentle hugs.xxxxx

  • Well I've been on prednisolone for 4 years at 10mg day.been on methotrexate n it effected my liver.now on Sulfasalazine pregabalin and amytripyline.want to get off the steroid but am having too much pain n swollen joints.methotrexate ifs normally given as first DMARD so guess you will be put on it.just hang in there til your next appointment n cry so he knows how bad it is love

  • I also wouldn't advise staying on prednisone if there is any alternative at all. Prednisolone has a cumulative effect, so every pill you take adds to your risk. The main risks are triggering diabetes, osteoporosis and adrenal failure, and its not so much a case of whether you will get side effects (which are likely to be permanent side effects, unlike the side effects of most DMARDS), but how soon. For some people its a very short time on pred before significant side effects show up, for others it can be a longer period, but I consider it a ticking time bomb. (and I am someone who has to take pred every few months for a couple of weeks and would give anything for an alternative, even though it is effective).

  • I have had RA for 40 years. For the first 20yrs I had numerous treatments (anyone remember gold Injections? ) none of which were very effective and all of which made me feel so nauseous it was far more debilitating than the RA Pain! There was no methotrexate in those Days! For the last 20 years I have taken prednisone on an off in variable doses - usually no more than 7.5 on alternate days, then up to 5 daily. For the last 6-7 years have been on 3mg daily.

    My body will not let me give it up completely.

    I have osteoporosis - for which i take medication - and my skin is as thin and fragile as a 90 yr old (I am only 64!) So ideally prednisolone long term is not to be recommended. But without it I would not have coped.

    Pain and inflammation controlled well without feeling sick - I've been able to get on with my life. I am paying for it now, but have no complaints, as I know at the time all those years ago it was right for me.

    Weight Gain? I Wish! At 6 stone I'd love to know how to put on an ounce, never mind a few pounds!