PMR or RA?? Newly diagnosed... Will begin methotrexate, any suggestions please

Hi everyone,

Previously I posted in the PMR section because I believe that is what I have. But of course, every rheumy I have seen says it's impossible... Because I'm 34.

Everything started about early to mid June, I had a bit of shoulder pain. After it persisted, I went to doc, said it was probably bursitis. Then a week later, I woke up to the most intense pain shooting from my shoulder to my hand (and I know pain; I have a 5 mm disc herniation in my lower back), the pain was unbearable. Went to GP and he referred me to physical medicine thinking I had a pinched nerve in my neck. Got an MRI scheduled. At this point, all I get is pain killers. Two days later, I'm feeling things in my knees, hips, butt, and IT bands. That's when GP referred me to a rheumatologist.

In the meantime, I became crippled. Going to bed was a nightmare, lying down would aggravate my shoulders and the whole process would begin, pain in my hands, and as the night progressed, I became more and more crippled. Every part of me was affected. And my neck and upper back felt like a got hit by a bus!! By morning, I couldn't move. Husband had to prop me up, give me pain pill and hold water bottle for me to sip. After a few hours, the pain and stiffness would lessen, but it was EVERYWHERE.... To make a long story a little less long...First rheumy gave me 5 mg Prednisone, as blood work was being done. Didn't seem to make much of a difference so after about a week, I stopped taking it. Whoa! Did I feel the difference then! So I got back on the 5 mg and it was an aha moment. I went from completely imobile and excruciating pain to "hey, let's go get something to eat out" in a matter of a few hours. When I saw rheumy again, he upped it to 20 mg of Prednisone, then 40 mg Prednisone for a few days. Upping the dose didn't make a huge difference. More blood work was conducted. Here I am 2 months later, he claims to have ruled out Lupus, Fibro, and other viruses. His conclusion is RA. Since then I have tapered Prednisone to 10 mg, feeling more pain, especially in my feet and hands, but manageable. I get a lot of achiness in many places, legs, trunk, chest, and feet constantly hurt, is this normal?

Also, my feet are constantly tingly and sometimes it crawls up my legs. Didn't really have too much of these sensations initially. I will be starting methotrexate (10mg/week) along with 1 folic acid pill per day. I am really nervous about it. I've read the scary side affects and people's experiences. I'm hoping since Prednisone seems to have treated me right.. Hopefully MXT can be okay with me to. Please, any suggestions at all? When to take it? Should I split the dose? Can I take Prednisone and MTX at the same time?

Any foods that helped you with the potential nausea? Or hair loss? I take hair supplements and assume I can continue to do so.

I feel really lost. I went from a happy, super active person to a complete 180...I went through a grievance period and have decided to stop comparing me now to me in the past, have set new expectation and have made it my determination to not give in to the sorrow that was enveloping me.... It was getting into a dark scary place!!! So now trying to be positive and hope I can be of encouragement and light to you all as well.

Jess

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  • Hi Jess. Your story sounds similar to my RA journey. Mine came on very quick and I became so disabled. Lying down hurt. My whole upper body fused. I felt ill and couldn't lift anything. Even a light bed cover was painful. I did in the beginning also have tingling in my legs and it feels like it's just as much muscular than joints. Anyhow. That was over a year ago. I got put on 20mg of methotrexate. I've had no side effects at all. It's been my absolute lifeline. It took a while to kick in - a good few months but now it has, I can't believe how much better I am. I'm also now (8 weeks ago) on a biologic. I do still have occasional 2 day flare ups but on the whole I have so much mobility. I just don't want to go back to those dark days. I'm thankful to the medicine that it can support me getting back to health. Don't fear it would be my advice. Compared to not having it is no life at all. Good luck. Think positive. That's the only way forward.

  • Thanks for the response, Aloquifiqie!

    It's nice to finally hear of someone who had a positive experience and outcome from MTX. I hope your progress continues steadily!!!

    Everything is so new for me. Rheumy said I should do light exercise, but do I do it despite pain or once pain starts, do I stop? He was so short with me. Basically, "take these pills for a month, then come back for a blood test, bye." Yes, I'm exaggerating a little, but honestly that was the gist of it. May I ask, are you still on MTX? Or that's why you switched to biologics?

  • Yes I'm still on both methotrexate and benepali biologic. I was given biologic to get me even more mobility. I'm not sure yet if it makes that much difference. It's hard to say. On the exercise thing I would say, don't stop moving. It's always the answer for me to move when I'm stiff. A combination of rest and exercise. Good luck on your journey. I really do feel like the meds gave me back a life.

  • I am so sorry that you are going through all this. Just remember to keep your head up and if you ever need to talk to someone who has lupus and many other things, you know you have a friend in the states.

    Hugs,

    Terri from Fort Collins, Colorado.

  • Thank you for the kind words Terri! It's just so nice to be amongst individuals who can understand the kind of pain we are in.

  • What a miserable time you've had, and very impressed that you're trying to find positivity - I think it took me much longer to get over the shock.

    Anyway, my RA was much more classic as I'm sero-positive but also hit me like a train and went from mobile, happy & healthy to a bed ridden lump. But methotrexate is my best friend now as I'm back to 95% normal and have been so for 5+ years. I have a full head of hair, no side effects apart from needing an extra hour in bed the following morning, and generally little pain except when I flare.

    For the first couple of months I had a bit of nausea and wooziness, and my hair thinned a bit. But that all wore off. I was on prednisalone to start with alongside MTX until it started to work. And it did take quite a while to take effect - basically 3 months or so after I had reached an effective dose. I started at 10mg like you and built up slowly.

    I take it at night, I drink lots of water, and have altered my lifestyle to live much more healthily which I believe helps minimise side effects. For the majority of people it really is fine....

  • Thanks for your input!! I found it so encouraging! I took my 10 mg of MTX last night and although I felt the effects kick in within 5 minutes (wow!), I think I handled it relatively well, just a gnarly headache and weird pressure in my face, like sinus. Much better now as it is the next day. Since I have tapered to 10 mg pred, I've been feeling a lot more pain, especially in my feet. So I asked rheumy if I could up it to 12.5 and he acquiesced, so I think upping it a bit has also helped me today. Am able to walk a bit more normally!

    Hearing that you are 95% and maintained that for 5+ years gives me hope and I am so happy for you. I hope you remain on that steady road!!

  • It is quite possible to start with severe pain and stiffness in the muscles rather than the joints, so the PMR is often diagnosed first and then when the joints become obviously affected the diagnosis is switched to RD. Having had classical joint swelling presentation in my thirties, then told that I was in remission and off all medication in my fifties, I then had a typical presentation of PMR in my sixties, followed a few months later by, wham, swollen painful wrists and hands, so typical of RD.

  • Wow! interesting...at least you achieved remission at one point in your life. I wonder if maybe you've always had a combination of both PMR and RA, but no one diagnosed it as such. I hate it when doctors are so definitive...it is not like they are God and can be absolutely sure.

    How are you getting along with the RA? Are the meds treating you well?

  • Have you had mri of your sacrilliac joint? I have just had the latest diagnosis of AS. This is after 30 years of various other diagnoses. I am sero negative but have high inflammation levels. I have refused mtx as way too many horror stories so currently on hydroxycholoroquine which i dont think is having too much of an effect.

    Pretty much lost faith in consultants and drugs. Have retired early and that helps. Try to keep as active as possible.

  • How about considering rethinking methotrexate. If you look for horror stories you will find them. Have you looked for the successes? There are so many and millions more who post nothing because they are getting on with their lives! It's a challenge but living with RA is already a challenge.

  • So true!

  • Hi lupus_01,

    I'm sorry to hear that you have gone through decades of this madness..trying to figure out what you have..being diagnosed and then diagnosed again with something else. I can see why you would want to say to hell with it!

    I have done a lot of MRI's for my back in general (I have a herniated disc L5-S1) because I was super active before for many years...weight lifting, dance, and even teaching a cycle class. So it seems like my spine is OK for now. All the vertebrae look pretty good..aside from the one protruding disc that I have.

    I have to agree with Aloquifiqie. Maybe you can give the methotrexate a chance...imagine it does wonders for you! TRUST ME, I was as nervous about it as I could possibly be and just felt like I had to give it a chance...I read all those horror stories...but remember it's usually the worst case scenarios that make it online...always the unusual, or horrid case because people are upset and bewildered...as they should be! But remember we are all individuals, and will react independently. Not here to tell you what to do. Just know that I took it last night, and yes, had a really bad headache, but I am okay today. I hope when I take it next week it will be similar if not less of a side effect.

    All the best to you!!

  • You sound just as i was to begin with i was diagnosed RA and PsA that gave ne the"crawling"in my bady god it was awful am now on leflunamide whicb 7dies help but have just started with Humira injections so see how we go. Firstly they diagnosed RA and it was a while before the PsA startedand i swea6yr that is more painful than RA. I hope u get sorted soon my thoughts are with you. You will get lots of support here take care Linda xx

  • Thanks, Linda :-)

  • Hi Jess,

    Hope you're having a good day.

    It looks like you might be getting some extreme reactions to environmental triggers that you are highly sensitive to.

    Bursitis is a problem for people who have RA with severe sensitivities. The pain in your shoulder is caused by high levels of inflammation that occurred because of an acute reaction to something by your immune system. Your shoulder problems suggest that you are severely intolerant to something you may be coming into contact with regularly. If you remove that trigger your symptoms should dramatically improve and eventually you should be able to stop taking Prednisone which is only putting a bandage on the problem right now.

    Please read some of the books below and everything will make sense. Good luck.

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  • Hi Allsopp,

    Thank you for chiming in.

    I have actually looked up that book by Amy Myers.

    I do believe that environment and what we put into our bodies matters for most (if not all of us). I am going to an Integrative Medicine clinic soon that does extensive lab work and certain services and hopefully I can find out what are my gut irritants/foods more compatible with my genes and all that. I feel it is much quicker than the process of complete elimination and then reintroducing. I have a hard time reading my body when it comes to things pertaining to diet...ever since I started my 30's, I've felt that way..especially because I was so heavily involved in the fitness industry and sometimes my body was just not doing what it was supposed to do. But that may be because all along I was leading up to something autoimmune...not really sure. But i digress...

    Thank you for the other suggestions. I will definitely give them a look.

  • Hi I was diagnosed with RA just over a year ago. All started with terrible pain in my shoulder couldn't lift my arm then went away and happened in my other shoulder did the same with my hands and wrist. My gp was very quick to do a blood test for RA and sure enough it came back positive. Got a RA specialist appointment pretty quick and she started me on 20 mg a week mtx and 5 mg folic acid per week. No side effects really also took prednisone but still got flare ups. So she put me on Plaquenil instead of Prednisone and haven't had any more flare ups since so far. Do get pain in my knees still though. Hope this helps you hope meds help you as well.

  • Thank you for sharing SylviaMA!

    Is it typical to treat RA with both methotrexate and Prednisone?

    My Rheumy said I could do light exercise like walking, swimming, Pilates, etc. But anytime I try anything, I hurt a million times more! I tried to do some light stationery bicycling, and my left foot has been in the worst pain ever for the past 3 days. I had to up my 10 mg Prednisone to 12.5 mg. At least I think that's why I feel some relief...

    Ahh I hate the knee pain...I know what you mean. I'm happy to hear you have had a measure of success. I wish you all the best!! Please keep in touch 😊

  • My RA specialist put me on Prednisone at the start but she doesn't like her patients in it for too long. Quite a few if the members of this group take Prednisone 😄 I find Plaquenil to be very effective.

  • I know they want you to do the exercises to keep the muscle around your joints strong. It hurts but it helps in the long run just don't overdo it 😄

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