Actemra verses Methotrexate

[cassey1879]

Has anyone been on both drugs and which worked better. Worst blood work in two years when was on 60 mg. and can't get below 32 without having a flare. Had biopsy dec. 2014 Thinking of the IV done at hospital once a month for the actemra. Having a lot of stomach issues so worried about the Methotrexate, plus only one working kidney, scares me. Been tryng so hard to wean down, but just not working. Thank you for any info you can give. me.

[Celtic PMRGCAuk volunteer]

cassey, what a dilemma for you but whereas it is likely that you will receive replies from contributors to this forum who have personal experience with Methotrexate, I doubt there are many, if any, who have such experience with both Methotrexate and Actemra (Toxilizumab) mainly because Toxilizumab hasn't been approved here in the UK for the treatment of GCA yet, only for rheumatoid arthritis. However the studies on Toxilizumab for GCA have been completed and we are awaiting the results, which do sound promising thus far.

Having only one kidney which is also low functioning myself, I can so empathise with your worries on that score but, no doubt, your kidney function etc would be well monitored whichever pathway you choose. I consider myself blessed that Prednisolone alone worked for me and I was able to reduce down from the high doses especially, without Pred affecting my kidney function (the previously undiagnosed and therefore untreated inflammation and Ibuprofen had already done its evil work there!). Personally, and I don't know why, if I had to choose between the two at this stage in my case, I would probably opt for Toxilizumab, but I must emphasise that is just my personal view. Do seek out as much expert medical advice as you can and I wish you well whichever decision you make.

[casse in reply to Celtic]

Thank you Celtic I appreciate your sharing this information. I am trying to get as much information as I can. Neuro ophthalmologist in Philadelphia first suggested actemra when tod was worried about Methotrexate said his patients doing well on it & when found ins. Would cover if done in hospital as goes under medical plan and not prescription

[PMRpro Ambassador]

There is no real evidence that methotrexate works to help reduce pred in GCA. You can have it as injections though - which avoid the stomach issues but not other side effects. There does appear to be evidence that Actemra does induce remission.

As Celtic has said, Actemra isn't approved for GCA anywhere yet - it is being used in the US for a few people but it isn't covered by most insurers because it is of-label use and alternative funding has been set up for them or their diagnosis has been changed to RA - which it is covered for and for which it has been used for some years.

But to be honest - you are only just over 18 months and flares in GCA are common in the first 18 months, especially if you are trying to reduce in too big steps or force the dose too far down.

[casse in reply to PMRpro]

Thanks PMR. I've been telling my roommate that I'd like to try and get the prednisones down on my own the last she agreed but another flare I need to be on something. Since sugar is really bad now and osteoporosis, and don't like to see the raised arteries Plus the Eye pain. Just feel I should be lower than 32 and close to two years. Again thank you 😉

[Joyful13]

Cassey, I have been on Methotrexate and am now on the Actemra. I had the same difficulty with Prednisone with the GCA. Every time I tried to reduce from Prednisone 40mg, I had a flare. I tried both oral and injectable Methotrexate with no improvement at all. I live in the U. S. My rheumatologist encouraged me to try the Actemra. I have been having monthly infusions since January 2016. My ESR and CRP levels are in the normal range for the first time in years. My insurance through Kaiser permanente completely pays for Actemra. Actemra should be FDA approved within the next year for GCA. The day after the Actemra infusion, I am usually pretty tired so I try to keep that day a rest day if possible. Sometimes, I do have some headaches the first 24-48 hours after the infusion. They check your liver and kidney function each time before you are given another infusion.

I have an appointment with my rheumatologist in 2 weeks to discuss everything. We also keep in contact through email. So far, I feel the Actemra is helping the GCA.

I wish you the best in your health.

[casse in reply to Joyful13]

Thanks joyful, you are a blessing. What state are you from? I am in New Jersey. Was surprised my insurance will cover but told as long as it done in a hospital it goes under medical insurance not prescription plan which would not be covered if you're done with the shots at home plus had been in an ER too many times with reactions to drugs. Don't do well with procedures/etc. Accidentally Had lungs collapsed from nerve blocks and I'm allergic to most antibiotics so I am a bit scared about having a reaction.

[PMRpro Ambassador in reply to casse]

I have to say - if it were covered by my insurance I would seriously consider it. But there isn't the option here in Europe yet.

[Joyful13 in reply to Joyful13]

Cassey,

I live in California. I understand your fears about medication reactions. Prednisone was just not relieving the symptoms with the GCA. Plus, I was having such severe problems on the high doses of Prednisone. The Actemra is noticeably helping, and fewer side effects fo me.

I wish you well in your decision making.

[casse in reply to Joyful13]

Please let me know how your appointment goes. You said you were on 40 mg when you started Actemra? How quickly did they start low rank the prednisone?. How much are you on now? I am back and forth 32 1/2 to 33 mg. trying to decide whether to try one more time without a flair or Try Actrmra. See my Rhummy on 9/26. Thanks Joyfull

[Joyful13 in reply to casse]

casse,

I was on 40mg of Prednisone when I started the Actemra. I started decreasing the dosage slowly, about 5mg a week until I reached 10mg. Then, I slowed way down at 10mg. I am now on 5.5mg and have been staying at this dose for several months. I hope to start decreasing 0.5mg at a time. It's a slow process on these low dosages. I think I will ask my rheumatologist to check my adrenal glands next time I have blood work done. Everyone is so different in their journey with GCA, but we all go through some similar steps.

Take care of yourself, Casse.

[casse in reply to Joyful13]

Thanks joyful, that is awesome and such an encouragement. How long were you on the 40 before you started the Actemra And how many monthly injections to get down to the 5 1/2? I think would be a good idea also to have your adrenalines ichecked. Please let me know how you make out again thank you for your information and encouragement, much appreciated. You did say 5 mg a week not 5 mg a month, correct?

[Joyful13 in reply to casse]

Casse,

I was on Prednisone 40mg from May-December 2015. I am on Prednisone 5.5mg daily. I was down to 4.5 mg for a while, but had to increase the dose for now. My rheumatologist is going to increase the Actemra with my next infusion.

I encourage you to talk with your doctor about the pros and cons. For me, the Actemra is a blessing. I hope it will be for you as well.

[casse in reply to Joyful13]

Thanks joyful, that is so encouraging. Two years ago October and November was on low dose of 20 mg for PMR then the biopsy bumped up to 60. And just can't seem to get it lowered. We'll see Rummy next Monday, and ask her. Would like another blood test first and of still bad going to tell her go ahead put approvals in for The actemra monthly infusions. Can u drive after or need someone with you?. I am so glad to hear that it is working for you. All three of my doctors are recommending saying I have to get off prednisone and now have drug related diabetes. Again thank you for your knowledge and support u are in my prayers. Let me know about your test. 😉

[Joyful13 in reply to casse]

Casse,

I encourage you to have a driver the first few times just to be on the safe side. I went to the last infusion by myself.

You are in my prayers as well.

[casse in reply to Joyful13]

TY Joyful, think u go same day to your doctor 9/26? Will be praying. If I decide will have mr daughter take me for them😉🙏😇

[beringer]

Hi, I was on preds for GCA PMR for 3months I started Actemra soon after I was diagnosed, got monthly infusions for 15 & now in remission. I'm a true believer in Actemra & think You would be too. Let Me know Your decision. Thank You & Good luck..

[casse in reply to beringer]

Thank you so much you are such an encouragement

[Hidden]

I wished I had more info for you as I only was given methotrexate.

I was on Methotrexate for about 5-6 months along with prednisone. It was supposed to be sparing med for prednisone.

I always felt sick to my stomach and it only felt better if I ate which in turn I gained 40 lbs. When I finally said no more I felt like a new person. Even my friends wanted to know what corner I turned. I felt poisioned.

I am super sensitive to meds.

Blessings to you

Lin

[casse in reply to Hidden]

You sound so much like me I have a bad problem with medication and antibiotics so sorry to hear that you didn't do well on the methotrexate glad you are feeling better now thank you for your input.

[evafel]

I have been on Roactemra, for me it didn't work, had to many bad side effects. Now I'M on Methotrexate and Humira and it works for me. My blood results are all good. I have been on that for 1,5 Year now

[casse in reply to evafel]

Glad that you were doing a little better and thanks for your information

[christine2715]

I now take leflucimide with no problems. Have also taken azatrioprine which I did not like.