Carla’s Corner: All About Simponi

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.

Read More: http://carlascorner.wordpress.com/2009/10/13/all-about-simponi/

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.

20 Comments
20 comments
  1. Stephanie says:

    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 says:

    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 says:

    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 says:

    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.

    Cheers
    Vivienne

  5. Fran says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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. Sarah says:

    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

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>