I had my first rheumy appointment yesterday. I was officially diagnosed with RA and have been given options on which meds to take. Rheumatoid factor was positive, CCP positive as well, but my inflammation levels, CRP and ESR, are normal. It was first thought I had lupus so RA has thrown me for a loop with the new bloodwork. Everything started with feet issues, and then moved to my hands and shoulders in August. My doc mentioned that my disease is currently mild and I could go on hydroxychloroquine or methotrexate.
I am not asking for medical advice but I am wondering if there is anyone that has previously been in this situation. I also know everyone responds to the drugs differently but reading about them has me worried about side effects. This is all very new and I am researching as much as possible. If it is mild I feel like going with hydroxychloroquine may be best but I wanted to hear from others on their experiences with the drugs. It would be lovely to hear from people that have been or are in similar situations.
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rue04
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I forgot to mention that I am 33 and had x-rays that showed no current joint erosion. I know this is a lifelong disease and I am hoping to make the best of this. Just unsure on everything at the moment!
The way RA is best treated is with aggressive, early DMARDs. This approach is supposed to work best at getting it well controlled with the possibility of tapering to lower doses after four years.
That is what our Rheumatology Dept head consultant demonstrated in a recent talk to our NRAS local group at our first group meeting. (Local groups are listed on NRAS website, closed groups being developed on Fb too).
In practice, each area consultant seems to take a very different approach eg lots here have a cocktail of two or three DMARD drugs. Some have one drug for RA.
It is difficult, being given a choice! Good luck with your decision and progress.
Hi rue04 I'm sorry to hear about your diagnosis , I was diagnosed in april this year and it took me a long time to come to terms with it , I also have mild RA and I'm taking sulfasalazine now i am on 2 tablets a day i was taking 3 initially , now and then pm the odd days o do have pain in my fingers but not as bad as what it use to be , I'm thankful that I can still live a normal life, try not to worry too much but look at the medication options for you. My consultant recommended sulfasalazine as it's not as harsh as the other meds. Contact me if you have any questions I am more than happy to support you x
Thanks for your reply! I’m so glad your treatment has been working for you! I was given the option of Sulfasalazine as well but I had a strange reaction to a sulfa antibiotic so I think I will try to avoid that one for now.
I am the most confused because I was given the option between these drugs. If my doc had mentioned that she recommended one over the other and explained why I think I would be having less of a tough time. I may make another appointment prior to deciding because I’m not sure if there is a reason I should do one over the other.
I had the same experience. My doctor prescribed prednisone for the short-term and gave me 5 handouts about medications and explained the side effects and costs. I chose methotrexate because it's a dmard and it slows down the damage. Its also inexpensive. I've had two doses over the past 2 weeks and feel no real side effects. If I need to I'll add a biologic later, but just getting started on this path too.
Hi, I was diagnosed seropositive this January. My main problem is with my feet, a bit in my hands and general creaking everywhere 😕 I was on Methotrexate for nearly 6 months, it was working but I just couldn't tolerate the side effects. Lots of people are able to tolerate it well though and it's effective for them. I'm now on Hydroxychloroquine (12 weeks) and it's just starting to work for me. I haven't had any problems with it at all so fingers crossed it continues.
If you try the hydroxychloroquine you need to have your eyes checked regularly as it can cause problems but I think that is quite rare.
We all react differently with the drugs and you may need to try more than one to find what suits you, it's all a bit trial and error really!
My rheumatologist says methotrexate is the go to medicine for RA. He’s definitely against prednisone as I mentioned to him that I wouldn’t take prednisone. Had a former sisters-in-law who was on prednisone and she got so large I didn’t recognize her on the street last time I saw her. She’s passed on now. My ex was on prednisone as well. He didn’t do that great with it. He also developed shingles while on it. We divorced some time afterwards. He’s also passed on.
I was in a similar situation when first diagnosed, and have been tested for Lupus on numerous occasions since.
Anyway, I started on Hydroxychloroquine and it suited me and worked well for some years. The side affects are minimal compared to other drugs. However, it is a 'suck it and see' situation as we all react differently to the drugs.
Good luck and hope you find the one that works for you
Thank you! It’s so nice to be able to post my worries on here and find out how other have handled similar situations. I was expecting lupus so I had done research into that and wasn’t quite expecting RA.
The thing to bear in mind is that you can change your mind. This is a disease that requires patience and perseverance and things rarely happen quickly. So you can start one and if you don’t like it change to another.
The other thing to consider is whether you feel more comfortable starting with a milder drug, with the possibility that it may not be effective enough for you. But if your x rays show no erosions then you have time,
Or going straight for the heavy gun, which may be more than you need and will mean regular monitoring blood tests. All of which is a faff. And at your age you also need to consider what your plans are for children, as that doesn’t go with methotrexate.
I have taken both, and had no real side effects with either after the first bit.
I have a 3 year old so my goal currently is to get everything under control so I can live a normal life with my family. I have done some research recently on how some rheumatologist suggest hitting the disease hard at the beginning to hopefully gain remission. There are so many things to consider and I am having a tough time with have choices with my meds!
Hi I was diagnosed in May this year. In June started on methotrexate as it slows the process down. Have had no side effects then July started on Sulfalasazine gradually increased to 4 a day. Mine is early diagnosed, luckily. Felt a bit sick but taking it with food helps. Have my odd days but pain is not as bad.
Thank you! I’m glad to hear the side effects have been mild. I have read some horror stories online and it has gotten me quite nervous for the meds
Hi and welcome. Sorry you have had to join us . A great bunch on here with a wealth of knowledge.
I too started with my feet then my hands. I was misdiagnosed for years and when eventually diagnosed damage was done . Catching this disease early is often the key to keeping this disease in check.
Side effects vary the drug companies have to cover their backs just like the disease people react differently and very often it’s trial and error. Your will here some horror stories( just like women given birth) but there are many more success stories. I have had minimal side effects mainly tiredness the day after my dose. I’m on methotrexate.
My bloods are nearly always normal even during a flare. Listen to your body keep a diary know your limits all these things will help you manage your disease. Managing your disease will help keep you on less medication ( not all ways but will help)
Feel free to ask any questions or to have a rant sometimes we even have a laugh 😂
Hi Rue04, sorry to hear of your diagnosis. I've had RA for a year and was initially diagnosed with 'early arthritis', then 'inflamatory arthritis', then later RA. I was treated with naproxen and prednisolone for the inflammation and then given the same options - Hydrox or Metho. I chose Hydrox and although this has meant I can take less prednisolone I still take 5 -7.5 mgs per day. Now I'm told that the Hydrox isn't strong enough for my condition and that I should consider Sulphazalazine or Metho.
The current recommendation is to hit the arthritis hard with strong drugs early on then reduce them as much as possible once the condition is under control. I've gone the other way starting on the milder drugs and now having to increase. My year has been uncomforatble to say the least and punctuated by flares sometimes keeping me off work.
With the Hydro I have no side effects at all. But looking back I think I should have chosen the Metho straight away although from what I read the side effects seem to take some getting used to.
Thank you for your input! I was thinking mild to start and working my way up to a stronger drug but I worry about what you have just said. Today I woke up stiff fingers and cannot move my shoulder and it is in a sling. Thankfully it is my day off but if it continues I may have to miss work tomorrow. I just wish there was a way to know! I will have to just decided and hope for the best.
I am hoping the new dose of drugs gives you relief!
Hello rue, you have many very good answers already. I can only add that if you look at what the illness can do to you if you don't take any drugs, then the possible side effects are a more than acceptable trade -off. I hope you find a medication that suits you soon.
Methotrexate is the "gold standard" drug. More and more research shows it to be safer than previously thought. I started taking it aged 70 and the dose was gradually increased to the maximum. I haven't had any terrible side-effects, though other people do get them. On the other hand, I was put on the maximum dose of hydroxychloroquine at the same time and on sulfasalazine three months later. After about a month on all three I got tinnitus. Stopping the SSZ only gave slight relief, so I stopped the HCQ as well (always with the consent of the rheumatologist). Sadly, seven weeks after I stopped it, I still have tinnitus. It is a very common side-effect of SSZ (more than 1 in 10 according to the leaflet in the box ) and of HCQ, though my consultant claims not to know of any cases and does not want to admit the drugs caused it.
The good news is that the RA is in remission despite having stopped those drugs and despite it having been "unusually severe" very soon after I got it.
You have to decide what risks you want to take with drugs. Some people will tell you just to put your trust in the consultant and of course you must, but be aware that their primary concern is nobbling the RA very hard and they sometimes make assumptions about what side-effects you should be willing to tolerate. If you have concerns, ask questions and go cautiously. My consultant wanted me to go straight on to 4 tablets a day of SSZ, but when I said I was worried about the possibility of tinnitus and about interactions with the other drugs, she agreed to start me on one tablet and increase slowly. Unfortunately, even that was not enough to save me from tinnitus. I have an ENT appointment coming up.
Went in with a swollen right hand. Blood test done came back with RA factor.
Put on prednisone until I saw the RA doctor the next week. (yes we get appointments with specialists very fast in America because we have a lot of Doctors to choose from)
RA doctor kept the dose of prednisone and added Methotrexate & Enbrel immediately without even doing Xrays of my hands/wrists.
Methotraxate made my long silky hair become brittle & dry and broke off up to my ears! Very bad. Taken off Methotraxate & stayed on Enbrel. Then had the flare of of flares in wrists that continued for a YEAR! Was on Humira, Xelzanz, then IV Infusion Actemra to try to reduce the prednisone. Nothing worked to get rid of the wrist flare pain except prednisone. Was on prednisone for so long at high doses that I now have Cushingoid! Gross. Do not even look like myself!
Anyway, because nothing has worked and I am desperate to get off this darn prednisone. I asked my RA dr to compare XRays from start of seeing him to present. He looked though his computer and said oh we never did Xrays, lets do them now. So he did and I was shocked that my wrist and hands show ZERO, nada, zilch bone or joint damage even though they were flaring for a Year! I was happy about it because I now know I am mild like you or what they call RA Stage 1. No damage
Being mild RA and being put on all those biologicals was Ridiculous!
Anyway, we decided to start at the beginning because I am only Stage 1 but must get me off this darn predisone. He mentioned possible Refractory RA because I am NOT responding to ANY of the RA drugs!
So I am now on Antibiotic Treatment of Myclycoline (100 mg everyday for 2 weeks, then 200mg twice a day), Real CBD oil prescribed by a Medical doctor, 800mg Motrin!
Being on this new regimen I was able to finally reduce the prednsione. It is a miracle!
My point being, please make sure to go slow. I wish I was never put on such high powered medications immediately! They had made my life a living hell for two years! Because of them I have to take even more medications than ever before to counter act the side effects from them! Oh and had to have full Sinus Surgery in the hospital because a Fungus decided to take up residence. Fungus was from one of the biologicals, we suspect Humira!
Anyway, just do some research before putting all those toxic drugs in your body!
I know they work for some, but they definitely did not work for me and made everything much worse!
I am glad your doctor told you you were mild and is only starting you on the basic stuff. Mine unfortunately went all in right away. I wish I had done research before I was put on all that other crap!
I am so sorry this happened to you!!! I am also in the US so was able to be seen within two weeks of my initial positive rheumatoid factor, anti ccp, and ANA tests. I have really just been struggling because she gave me options! That may sound weird but I know nothing about this so it has been very hard to decide which drug to take.
I’m glad you have found some relief with other treatments and have no permanent joint damage!
Hi Rue, as others have said, methotrexate is the gold standard for RA. It is far safer than first thought, and the vast majority of people have mild side effects, or they disappear if they persevere. MTX gets a very bad rap on a lot of forums, so please, don't listen.
Hydroxy is the mildest of all RA medications, and the safest. Safer than nsaids. It is very commonly given to people with lupus, as they tend to benefit from it. This might be why your rheumy offered up the option of starting there, and seeing how you go.
Its entirely your decision, but I can tell you what I would weigh up. If your disease is truly mild, then start with hydroxy, you have time to see how you go with that. Sometimes though, a rheumy will declare disease 'mild' when it is not infact mild. You can read a few people's stories, read about their symptoms and decide for yourself is your disease is mild.
If your disease is not mild, OR if you feel your disease is progressing, i.e. getting worse noticably over time, then start with mtx. You can start with a lower dose, and perhaps that will be enough, and have very minimal side effects. Hydroxy truly is only for mild disease that stays mild.
In all honesty, most people will wind up on a cocktail...you may well start hydroxy, see how that goes for three months, then add mtx in. It isn't usually a situation of swapping, but adding another med to the mix (assuming the first med is doing no harm).
Thank you! I believe it has been progressing as it starting only in one joint in one foot. Then over time moved to the other and now I’m the hands and shoulders as well. I never know what will hurt when I wake up in the morning. Seems everyday is different! I have read that having positive ccp and rheumatoid factor are indicators that the disease can be more aggressive. I think this is my confusion on which drug to choose. Thankfully as you have all mentioned I can choose one and if it doesn’t appear to be working start on something new.
I’d take whichever your Rheumatologist thinks would suit you best....it really is the luck of the draw...but your rheumy know your symptoms & more importantly how you will deal with taking the meds.
But bottomline you really do have to “ try it & see”....do remember all the side effects you read about will almost certainly not happen to you....so take the pills & get on with your life.....there are a lot worse things you could have been diagnosed with.
I've never had Hydroxychloroquine, and that would scare me a bit as I already have eye problems so don't want to aggravate that. Mtx is the one I would go for every time. As you've been told your disease is mild, you might not need a high dose.
Welcome Rue. You have had some good replies and some a bit scary. I have been on both for 20+ years and have had no problems once settled on them. I won't repeat what others have already said but if you haven't already visited NRAS have a publication on meds which you can look at for more information.
Same as me. I started on hydroxychloroquine but the n had to go on methotrexate which I was worried about but it helped reduce my symptoms and improved my condition.
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