Carla’s Corner: All About Simponi

RA Guy Community News 35 Comments

I get a number of hits as a result of searches for information about Simponi. To make it easier for people to find the information they’re looking for, I’ve created a new page “Simponi Synopsis” that will act as a repository and chronicle of my experiences with the drug. Those of you who are interested can also use the search feature on the blog. I hope this information is helpful.

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Carla, what a great idea! Thank you for collecting and sharing this information. I am sure it will serve as a great resource to many people.

Comments 35

  1. Stephanie

    I have been on simponi 3 months now! it was near impossible to find personal results from people who are on it lol..thanks for the info!

  2. Andrew

    Nice. There’s all these new biologicals out there and very little information. I just started Cimzia and can’t find any personal stories about it with RA. Nothing like being guinea pigs!

  3. Debbie

    I have been on Simponi now for 3 months and am doing well with it.I have found this med to work great the first 2 1/2 weeks and then starts wearing off and the flares start and you can hardly wait to get the next shot.I also take 10 mg of arava daily. If I flare I will take pred also but try and stay off the pred. unless its real bad.
    I have had RA for 13 years and am 52 now. I have tried allot of the biologicals and very thankful for them. The one that worked the best and longest was Enbrel.That was a wonder drug for me for 10 years and then I wore out my welcome and it was no longer effective.
    I hope this helps anyone that is looking at this new drug. I would rate it on a scale of 1 to 10 to be a 8 and is working for me at present.

  4. Vivienne Wood

    Good Afternoon

    I have been on Simponi for 4 months and I have had problems with it. I have had Bronchitis and ended up in hospital. I have never had it before. I also have a great deal of hair loss. I have now been off Simponi for 6 weeks and still losing hair and wonder if anyone else has had hair loss and if my hair will grow again. I hope someone can help me.


  5. Fran

    I have been on Simponi for 6 months. At first it seemed to work, was feeling better and more active, but now my other hand is starting to show signs of deformity also constant pain in ankle and wrist. Trying to contact doctor now to see what else might be available. Was on Humira for 5 years and it worked really well but over time it seemed to have stopped working also. Anyone else have this problem with Simponi?

  6. Frances

    I have bee on simponi for 11 months. within three to four months eyelashes started to fall out, now all gone, and now my eyebrows have almost gone, and my hair just pulls out in fluffy clumps, specialist does not believe it is the simponi,
    b ut that is the only new thing that has occurred in my life.
    glad to read that other people have also had this side effect.
    it has helped my life long rheum. arthritis, but i want the doctor to take me off it and she agrees.
    – F H Australia

  7. teri

    I have been on Simponi for over 2 years now and still amazed at the drug. No side effects (I know they say that it lowers your immune system but I’ve never noticed much more than the common cold) and it lasts exactly 30 days (sometimes I try to stretch it a week or so). I came here from the States and went to a rheumy here and he didn’t even know what it was??? Very odd. I praise this drug up and down!!!

  8. maria

    I have tried Humira, Enbrel and Simponi. I have experienced gradual thinning of my hair since I have been on these treatments. Currently I am on Simponi. I have found it to work well for my arthritis but get soreness and weariness towards the end of the month. My doctor is going to try another of the biologicals on me (with a smaller molecule) that he says should not affect my hairloss. I will tell you how it goes.

  9. Lavonne

    I have been diagnosed with rheumatoid arthritis. I’v been on methotrexate for several months and am up to eight pills a week. When I go back to the rheumatologist in Nov. she wants me to consider taking either humira, enbrel, or simponi along with methotrexate. I also take mobic for inflammation.I stay very tired and run down. I’m taking 2 folic acid pills a day and vitamin D.Plus I’m having insomnia! Have lots of stiffness in fingers, hands, wrists. I have had physical therapy for tight ankles and very stiff achilles tendons 🙁 Don’t really know what to do. Anyone with similar problems???

  10. annette moore

    Have been on lots of meds. for ra- now trying simponi. Have been on it for 5 months and have had severe hair loss. Interesting that others have noted this as well. Was never told this was a possible side effect. Have not noticed any significant improvement either. Have tried Humira, Enbrel , Orencia, Cimzia, methotrexate… help.

  11. Frances

    Frances, Australia

    I posted a comment in July re simponi causing my eyelashes and eyebrows all to fall out and that my hair was starting to fall out in clumps. Well, now end of Decembr I am completely bald, my GP thinks it is the Simponi, my rheumy thinks its stress, I have experienced major stress before incl. best friends sucidie in 1998 and i never went bald, occas. a few bald patches. Years ago Salaozopyrin made my hair fall out. I think it is obvious from the comments posted here that hair loss/ thinnng is definitely a side effect of simponi. It has taken about a year for it to build up and make my hair ALL fall out, looks truly strange and ugly. However, my rheumy says there is not munch left for me to try. It has helped my RA and i am now off cortisone.

    Has anyone gone off Simponi and eventually gotten their hair back???

  12. Frances

    Comment for Lavonne,

    I tried Humira and got very bad insomnia. My GP found on the internet that insomnia is listed as a common side effect of Humira. If you are already experiencing insomnia, I would not try this one.

    – Frances

  13. Beth

    I’ve been on simponi four months and have had hair loss for two months. I’ve reduced methotrexate to mfour each week. Hair loss continues. Bummer! i’m definately going to switch to hunira!

  14. Angela

    I started Simponi in Feb 2012 after Humira started to wear off [which began in November 2011] after 6 weeks on the loading doses my hair thinned 50%. I’ve been back on humira now since the beginning of May 2012 and my hair is still thinning, but not at the rate it was [previously I could run my hand through my hair and come out with a decent handful] Enbrel made my hair thin too but not like this.

  15. Sally

    I have been on Simponi for 5 months now and yes it does work for me – with alot less side effects than Enbrel. My only problem is that I dont eat. I dont even get hungry and have lost 7kg in 4 months without trying. When I do eat, I get full after a couple of mouthfuls. It is concerning me since I dont need to lose anymore weight. I did have severe indigestion for the first couple of months but the rheumie gave me a whole lot of more pills to take for this side effect – which I laughed at. It also does not seem to the last for the full month, but I have noticed a huge improvement in the pain in my hands, knees, back.

  16. Linda

    I have taken 5 shots of simponi now. My last was yesterday. My knee is swollen and hurting bad and my hair is thinning. It seems like it worked better in the beginning and my pain is bad today. I have ra for over 25 years. My ears ring all the time and I don’t really enjoy eating anymore as after a few bites I’m full and food just seems to be going thru the motions. My stomach has discomfort. I want to stop taking this drug and feel like I am a guinea pig for this drug. My doctor says I need to continue.

  17. ina

    I started humira about a month ago. Last friday I did my third injection. I have really bad insomnia. It got to the point where I can’t function. I want to get on Simponi. My Iinsurance does not let me untill I try humira. Does anyone experience insomnia with Simponi?

  18. Lisa

    So I will try to make my post make sense , because lately one of my main issues has been concentrating on things my brain just doesn’t seem to want to function i forget just about everything.
    I was diagnosed with RA over two years ago but i believe i have suffered longer then that, i also had thyroid issues in the past though my levels are good on that front now. Part of my issues i know are my own fault because i am a terrible patient, i get frustrated and stop taking my meds and seeing my doctor who is an amazing doc and his nurse is also wonderful.
    I started on embrel and methotrexate of everything i have taken since i think the embrel worked the best my doctor however thought i should have had better results so i switched to humara which i hated and did nothing for me, from there i went on to iv infusions remicade was ok. I hate methotrexate i take it and have terrible never ending headaches and so on and by the time i start feeling better from that its time for my next dose. so i stopped everything went MIA for awhile even pain meds which was the hardest part. so now i am back and my doctor is raving about simponi infusion and got my insurance to agree to no methotrexate. so now i am almost to my 3rd infusion and frankly i am still waiting for the miracle.. my doc is so jazzed about this drug i feel like i can’t tell him its not helping and that he is not hearing me. Yes my inflammation is down a great deal but i feel like i am in more pain now than ever, i feel like i have the flu after i get a migraine right after though it doesn’t last more than a day, my muscle seem to get lumpy for days after i am also having hair issues, i get extreme dizziness and i am still majorly fatigued (the worst part). I am starting to feel like maybe i am just being difficult even to myself. now that it’s getting cold its worse and i also wonder (for any female RA sufferers) do you seem to get worse during your monthly cycle?
    i guess i am kinda unsure of what my next step is i want to stick it out but i am so frustrated and frankly depressed.
    There is also the issue of pain meds i feel like that is the one thing that keeps me functioning but with the social climate about rx abuse it makes it difficult for people with chronic pain to talk about it or ask for it or say this is what i need to get through the day. my doctor is somewhat understanding but i never make it through the month with the amount i am prescribed.
    anyway i guess i am wondering if anyone is in the same boat and on the simponi iv should i stick it out or try and change drugs? and does anyone know if dosing can be adjust with this medication?

  19. Sarah

    forgetting he most helpful page I’ve found to date. Getting a patient’s view of the med is wonderful.
    I start SA in the morning. I have tried mtx and after 5 years of using it (1mlwith a biologic, developed an allergy to it. As for biologics I have tried: enbrel, remicade twice, rituxan, Orencia, and actemra. All But one worked for a while and then they stop suddenly as if one day my body figures it out and boom blocked. Even so, I’ve never gotten my numbers anywhere near normal.
    I will update after the infusion in the morning. I wonder how long everyone was under the weather post infusion. Orencia would take me out for a day or two. Remicade 3 days in bed unable to get up. I hope this one isn’t quite that bad.
    (*-*) Sarah

  20. Jen

    I started taking Simponi for psoriatic arthritis in march 2013. After 3 doses I felt about 75% better. I was told to hang in there and that the 6th injection would get me to “baseline” and I’d feel amazing. Two days after that 6th injection I did feel a huge difference! I tell you this Sarah (and everyone else) so that you’ll hang in there and not give up. I also take it at the recommended 28 day cycle. Make sure your doctor is prescribing accordingly. Be well!

  21. Elle

    Most RA patients experiencing hair loss are on methotrexate. I believe this is the main culprit. Steroids like Prednisone
    and pain med like Tramadol can cause insomnia as well as some antidepressants. It’s important to take these as early as possible.
    A few months ago I started on Simponi Aria IV for severe RA. This is the 10th biologic that I’ve been on.
    I can’t say it’s a miracle drug but I have had some improvements.
    My doc said it takes about 6 months to get full benefits so I’m hanging in there. Remicade worked really well
    for me until I developed severe allergy.

  22. Karla

    I was diagnosed 5 years ago with RA. The day after being diagnosed I had a horrible flare-up. I had never had a flare-up prior to being diagnosed so I was immediately started on Remicade infusions, methotrexate (25 mg) and several other meds. After a year on the methotrexate pills my dr changed me to injections because I had lost 70lbs and the injections generally have fewer side effects. The Remicade worked for about 2 1/2 years, but it just stopped working. I then started Orencia infusions, however some point while on the Orencia I stopped the methotrexate due to the fact I wasn’t even sure if it was even helping me since I had been on it since my first flare plus every week I was dealing with headaches, excessive fatigue, and hair loss. Not huge amounts of hair loss, but more than I ever had when I was “normal” (haha). 🙂 Sorry I have to actually laugh at that one because I have apparently been sick since I was 13 and I was diagnosed at age 32. After 2 1/2 years the Orencia seemed to taper off. After 2 weeks into the month it just stopped working so I started Simponi infusions. A month prior to my first Simponi infusion I started taking 10,000mcg of biotin. I just has a gut feeling that I needed to start taking it. Now I am taking two per day. My dr also doubled my normal amount of folic acid to 2mg per day. I received the initial Simponi infusion and had another one 2 weeks later, but I wasn’t feeling any better. So at my next appointment a month later my dr put me back on methotrexate just until the Simponi starts working. I just had my second full treatment almost a week ago. I have taken 3 methotrexate shots total since he put me back on it. In the past 2 weeks I have lost over half of my hair! Yes, I did mention when I was on the methotrexate before that hair loss was an issue, but NOTHING like this. When I run my fingers through my hair wads come out. When I wash my hair wads and wads of hair come out. To measure how much hair I was losing each time I wash my hair I roll in a ball. I know that probably sounds weird put it gets it off my hands and it keeps it from going down the drain. My hair hits to top of my bra on my back (where the closure is) if that makes sense. My hair is thick, well it was, when the ball is rolled up it is between the size of golf ball and a tennis ball. Thank goodness I had thick hair otherwise I think I would be bald. I went to dermatologist for my hair issue and other issues today. She performed a “strand test” which is basically where she took a few pieces of my hair between her thumb and forefinger and gently pulled on it gently. All of them came out. That is a bad sign. She requested bloodwork to check the levels of my ferritin, iron and a tibc panel, but everything was normal. After reading all of the comments I believe it is Simponi.

    Elle – I have to disagree with you about the insomnia. Yes, I am meds like Tramadol or Cymbalta can cause insomnia if taken too late. However, I have been told my rheumatologist that RA, Lupus, Fibromyalgia, etc can cause insomnia. I myself have problems with it weekly I will go 3 or 4 days without sleep. I have tried Ambien, but I think my Neurotin counter acted it. Whatever it did I did not work. So now I use Doxepin, but it is a 12 hour sleeping pill/anti-depressant. It makes me extremely groggy and/or I will sleep all day the following day.

  23. carole

    hi i have ben on simponi for 3 years it has been really good untill i was given the shingles jab i have had i sore eye i have my blood done every 2 months i have now been told i am on the border of diabetes and put on a lot of weight can this be caused by simponi please

  24. Sarah

    I have had 2 infusions of the Simpsons aria and my hair is falling out in words. Has anyone’s hair grown back after being on the medication or did the hair loss stop?

  25. amanda

    Hey fellow suffers, 🙁 auto-immune sux, i used remicade for a year which was great at treating my uc, but after a year i suddenly had precancer of the cervix….. though hpv was found in me a full 10 years prior, i had negative pap smears consistently every 6 months that entire decade including 6 months into the remicade use, so the possibility in my mind is that compromised immunity allowed the hpv to thrive when my body previously was able to keep it at bay; i was off of remicade for a year and wasnt consitent with my antiinflamatory pills because they were big and i had swallowing issues, and resultingly needed to return to biologics. I’ve been using simponi for 4 months now and am without uc issues, but for at least the past month I am losing ALOT of hair. Like another person said, luckily my hair was very full to begin with nut i cant even touch it without losing quite a bit, and it appears, as i research, im not the only one ;..(

    ALSO very important, before resorting to biologics I struggled to manage my uc for about 9 months after diagnosis with 6mps, antiinflamatories, etc, but I will tell u with DEFINITE CERTAINTY AUTO-IMMUNE DISEASE ACTIVITY IN WOMEN IS DIRECTLY RELATED TO THE MONTHLY CYCLE, if someone could figure out more about why this is, im sure it could be relevant to male sufferers as well. The day the menstruation comes down is the greatest hell, coming from a woman who never had any pms related issue what so ever. The best week is the second week after menstruation stops, plan vacations accordingly, the week before, of and after, no good. GOOD LUCK GOD BLESS KEEP FIGHTING

  26. Sandra

    I take methotrexate pills weekly and Simponi Aria infusions every 60 days. My hair started falling out at an alarming rate within a couple of weeks of starting. Mouth sores, exhaustion, infections in nostrils, nausea, chronic cough, throat burns and stabbing neck pain after taking methotrexate. Stomach pain, flu-like symptoms, inability to focus or remember things I have known for years, and just recently teeth breaking, oral lichen planus, and trigeminal neuralgia, which was incapacitating. I’ve come to the conclusion that I am the side effect queen, lol. Also lose my voice after taking the methotrexate and have severe headaches.

    So, we’re going to try new meds. It seems the only thing that really, really helps is steroid injections directly into the joints that hurt the most, but you aren’t allowed to get those often. RA is horrible. The side effects of the meds used to help stop RA’s destruction of our joints are often incapacitating. But, I will push on – even though it looks like I’m going to have to leave my job, because I have many more great years of life to live.

  27. horst graessle

    I had 2 simponi infusions ,so far it has not helped at all.yesterday, the bill came from medicare for the first infusion.i could not believe it.the cost is outreagus,i am beginning to think that i would rather put up with the pain then support the drug companies .my hair has not fallen r/a started 22 years ago,i will keep fighting good luck, heinz.

  28. Eva

    I was diagnosed with RA a little over a year ago. I was originally taking prednisone and methotrexate. That combination really hurt me more than anything. My doctor took me off the methotrexate and put me on humira. My hair started falling out at an alarming rate on the humira. I told my doctor and he said that the medicines I was on did not cause hair loss. I made a few life changes to lower my stress and the hair loss stopped. In fact it was steadily growing back. However, the humira could not control my symptoms. I would still flare really bad and often. I couldn’t get out of bed on most days. Just horrible. So my dr switched me to Simponi Aria. The difference has been amazing. The day after my first infusion, I felt like a weight had been lifted off my shoulders. The results have been amazing. I am not completely symptom free but pretty close. I have been on Simponi Aria for a little over a month without incident. My only complaint is that my hair is thinning again. 🙁 I just received my second infusion. Hopefully, the hair loss does not continue.

  29. sammy

    I am on Simponi for two months and noticed weight gain and indigestion. The weight is centered around the belly and abdomen but I have gained it overall. It was sudden and significant. Anyone else notice this? I am considering getting off the drug but would appreciate your feedback.

  30. Rose.

    I’m on simpini ..for about 2 years for really good ..only lately I’ve had a bad metallic taste in my mouth ..also not sure on the weight gain because I had problems with that before????

  31. Lynn

    Does anyone know how long it takes for simponi to get out of your system once you stop using this medication .

  32. Lynn

    Does anyone know how long it takes for simponi to get out of your system once you stop using this medication . My sister has every side effect and now she is in the hospital. She’s very ill , her blood is now septic. She’s been taking simpini for 9 months and has been suffering with RA for 30 hrs. So she decided to stop simponi , but I can’t find any information on Line to answe my question.

  33. Melanie Sauls

    I was diagnosed with RA about 5 years ago and have learned a lot about the drugs I am taking just by using them. I was first given Arava and it along with the methotrexate caused major hair loss so I started Simponi injections. I did these for a few years and it helped my RA some but there was still pain . When I used Simponi injections only my hair grew back and was very nice. Now that I have been on Simponi infusions for about a year and a half of longer my hair is thinning real bad again and I don’t want to take it anymore because I want my hair but I also do t want to be in pain . I also quit my job to help stop my stress but my hair is still falling out so it has to be the Simponi. It makes me mad how all of us know this is a side effect but it is not listed on the drug warning as a side effect.

    I will talk to my doctor but she didn’t even tell me Arava and methotrexate caused hair loss . But yes I think all three of these drugs cause my hair loss. I will continue to read this site for more input.

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