Since switching to syringes, I've been happy to continue taking Simponi, but after three months on this TNF, the first lot of blood tests show that I'm now "slightly" anemic. Not sure how "slightly" - as the Rheumy organised more tests, and I will be seeing the GP shortly for the results.

I've also lost approx 5% of my body weight in the last month (gone from 64kg to 60kg), and my hair has started falling out.

Yes, I will be asking about whether this is just a big coincidence, or whether I should switch back to Enbrel.

James

Hey James,
Was wondering how you were getting on. Sorry to hear of anemia being added to your medical resume. Hope that is easily treatable.
That's a little worrisome about the weight loss - that coupled with the anemia def warrants further investigation.
I lost most of my hair a couple of years ago and I'm still waiting for it to grow back - technically it's chronic tellogen effluvium. So, it still actually grows, but before it can get more than a couple of inches long, it falls out and re-grows. No bald patches, just no length. Docs have no clue as to why, but it didn't grow any more when I went off enbrel for months. Hair growth cycles are so very slow, it's difficult to know when to blame a medication or not.

Sure hope everything turns out to be ok.
Take care.
PS Simponi is unfortunately still not really doing anything for me, good or bad. I'm sure it's a placebo I'm getting... haha

Hi Jimmy, nice to hear from you!

I've been slightly anaemic for as long as I've had AS but never to a degree of requiring treatment for it. Not sure if this has improved or changed at all on Remicade. If you weren't showing signs of anaemia prior to Simponi then it's good that your doc is taking care to investigate this. New weight loss is worth keeping an eye on too.

I remember back when I first started Remi, I was convinced that I was losing more hair than normal and after about 6 months, finally asked my stylist about it. He said that it appeared as though I'd had a hair 'event' around the time I'd started the new med (by analysing the lengths of new hair growth) and told me that I probably just had a short adjustment period. He is an excellent hair guy and up on his stuff! His wife suffers from Lupus and he says that she has had many similar episodes when starting a new med... but no long term woes like our dear Megan has been experiencing.

Reassuring that your Rheumy is aware and I really hope this proves to be a blip and that you won't have to switch again. Having to switch would make me a bit nervous!

mig

Hey Megan,

So disappointing to hear that Simponi does not seem to be doing anything useful for you yet. I was hoping so much and trying to *will* it to work for you!! Glad that you haven't noticed any negatives effects at least. You have enough negatives to deal with already!!

Keeping you in my thoughts, Meg!

I have been slightly anemic for years and years of AS. It was a constant. never quite enough to treat aggressively. My red blood cells all were like young cells and stayed small was how I remember the doc talking about it.

It could mean you still have some inflammation in your system and the simponi is not quite taking it all out.

no help on the hair or weight loss. Might be a separate issue. Hoping for the best for ya

Thanks Mig, and to everyone for the support!

Simponi is helping me, and I'm able to sleep again.

It just seems that when I was on Enbrel I would sit at around 64 to 65kg.

So it could be going off Enbrel is why I've lost the weight, and nothing to do with Simponi.

Thanks for the info on the hair loss Mig. It wasn't drastic, but I just noticed it falling on the floor and onto my face when I was combing my hair in the morning.

James

So glad to read your update. I finally got approval from my health insurance and they are covering the cost 100%! Very lucky for that! I haven't had my first injection, am heading to a clinic to learn on Monday. A bit of a chicken and quite nervous about injecting myself. Since the autoinjection device isn't available right now, I am using the prefilled syringe. I just have to think of the big picture..one injection a month for some relief of symptoms of A.S!

Hi Ellie, I sent you a PM!
You're going to do great! Those prefilled shots are really very simple to do, and they barely hurt at all. It surprises me every time I do a shot.
I hope this is the med that changes things for you, positively, in a really big way.
Good luck!

Hi Elliejam,

I've gone of the autoinjector's since the problem with the last one.

It was so frustating (as you can probably read in my first post on it) not knowing when or if it was going to inject.

Don't seem to have any problems with the syringes, and they don't seem to be painful at all.

Hope all is going well with you.

James

Continuing my update...

Simponi is working for me, and the weight loss (isn't it i before e accept after c, so what about "w"???) has stabilised.

Talking to my GP, he agreed that Enbrel may have helped me put on weight, and now that I'm on Simponi, I'm going back to my natural, no muscle, skinny self

I must admit to having a little worry about using something that is so new, especially after watching 4 corners the other night which showed the problems with the new beaut hip replacement - 100,000 operations done world wide, and they think they may have to take out almost 50,000 of them over the next few years. The problem is the new hip is poisoning ppl when the metal rubs on metal and gets in the bloodstream. It was promoted as the newest and most effective hip replacement out. Sound familiar?

Still, it is good to be able to keep the pain almost under control - as long as I remain inactive.

Have a good one!

James

After cancelling my firt injection clinic appointment..they cancelled on me, I had my first injection lesson yesterday. I love how they check my pulse before I give it to myself! Hello people, I am nervous and it showed by the racing of my pulse! They must be used to it cause the nurse didn't bat an eyelash. We went over the information kit they gave me. Lots of information, almost too much! He (the nurse) gave me a tester syringe so I could see how it worked. Oh my god, it was so quick. Then it was time for me to inject myself. Thankfully, the roll of fat on my stomach was actually useful this time! I can't tell you how relieved on how easy it was. So quick and painless. I did ask for a huge bandage only to get sympathy from my husband. You could barely see the injection site. Believe me, I am so pale, any red mark would show. That was it. Done.
Now they can check my pulse..I am cool and a cucumber. I will stick with the prefilled syringes. My son is so sweet ( I have two boys and one girl), he asked if I was feeling better when I got home. Did the medicine help. I kept telling the kids, once I got onto my medicine, I would be able to walk longer distances. I told him it might take awhile for it to work. But this morning I didn't wake up stiff. Probably my mind playing tricks on me. My real test would be to head to the nearest mall and walk around it. I couldn't do it without stopping all the time. I would be going to the mall purely for science!
I am so giddy that it all went well. I was so nervous before the appointment. Have a great day everyone!!! Eleanor

Hope it works for you. Your kids sound wonderful. Shopping for science...I'm happy that some people are always up for sacrifice for the sake of science.

Hi Eleanor,

I hope that you woke up with less stiffness because of the Simponi. That would be a great result.

Your reminded me just how stressful the first few injections were for me - I think we quickly forget these things. It can be quite a psychological challenge.

So glad it all went well.

James

I am so happy for you James, nice to have some relief.

"Still, it is good to be able to keep the pain almost under control - as long as I remain inactive."

This is an interesting comment, as long as you remain inactive...you know I couldn't agree with you more...pay pay pay if I over do it!
This is my second month of Simponi and I found the side effects lessened but the relief didn't come for 15 days and I really only have had a week out of it and the pain is starting again...but I have been busy so that may play a big role in pain relief, right?

Hi Daisy,

My neighbour has AS, yet she still looks after her husband and kids, plus works part time, and is always in pain. No wonder.

Most people with AS aren't able to stay inactive because of work and/or family commitments, and I think that is half the battle - no matter what medications or dietry regime you are on.

All the best,

James

Had my second injection of simponi! Did it myself this time. Will not be switching to the autoinject when it become available again. This prefilled syringe is so nice and easy. Perhaps it is the nice roll of fat I have that makes it easy...moving on..I find it works great! I can walk a lot better, and for longer distances. I no longer take NSAIDS! They were bugging my stomach anyway. So all I am on is the simponi. I haven't experienced any side effects either. Knock on wood! Bought some nordic walking sticks and when it ever stops raining, I will head out walking. I can't believe the difference a few months make. Man, when I think of the pain I was in just trying to go up the stairs! I feel human again!! Yea!

The problem with inactivity is fusion. If you move you will not fuse.
I have always done a very vigorous yoga workout and have no fusion. If I'm in real bad pain I just modify it.
I think the worse thing to do is not move. But to each his own.

Like the sands in the hour glass....

Continuing on with my Simponi saga

It was giving me two weeks of relief for the last two shots - although I wouldn't inject until week 3 when the pain had gotten really bad and I couldn't sleep, but now the injection seems to have only lasted days.

I'm guessing my body has gotten used to it.

Am seeing my Rheumy on Tuesday, and I think I'll be switching back to Enbrel.

James

I am so glad to find this thread it was just what I was looking for! After failing Remicade, Humira(sp) and now Enbrel I am off to Simponi when the insurance finally approves it.

My Rheumy warned me that I might experience weight loss with it. I am about 50+ lbs overweight and trying to lose anyway to get pressure off of my joints and back so that will be a plus for me.

As for the hair loss my doctor has had me on folic acid for quite awhile due to the methotrexate I take can cause hair loss. So far I still got waayy too much hair. So that's not a prob.

I was/am kind of worried about the only 1x a month injections as I am use to weekly Enbrel, which isn't working anyway.

Jimmy, I am sorry to hear Simponi is not working for you, having failed 3 already I can feel your pain. I love your sig btw. so true I ache, therefore I am.

Have to agree with Finnari on the movement though. The less movement the more fusions. Now when I over do it, I am down for at least 4 days to a week depending on if I am flaring at the time. since Enbrel is a fail, flaring is about every other week. But there are some wonderful dvd's out there for Yoga for the back, qigong, tai chi or even swimming gently is good for your body to get movement. Just imho. Yes I do have to force myself to get moving, especially on bad days.

Elliejam, oh I remember those days of oh my god I have to stick myself with this. One of the meds I was on and failed I called the flaming, demon, devil fire shot from He!! lol it didn't hurt but burned like heck abt 5 minutes after injecting. I use to sit it on the counter and make deals with it. Like ok I will get to you and you will not burn me today. My son who was 13 at the time was so sweet abt it, he still reminds me about taking my shots. I envy you being able to walk the mall.

Hopefully this Simponi will not be a fail like the others. I would love to go walking with my son and dogs and explore. But as Jimmy said I think my body get use to the meds and then stops.
I really don't know what the next step is after this one should it fail, that's what brought me here today. To see if anyone has had success with it.
Hope you all have a beautiful day.

Good Day to you all,

I am wondering if anyone would be able to give an update on using Simponi.

I am 25 years old and was diagnosed with AS two and a half years ago. Recently, I've been diagnosed with RA in my hand and foot. My Rheumatologist has had me on a few meds:

Arthrotec 150mg/day
Sulfasalazine 2000mg/day
Prednisone 10mg/day
Methotrexate 25mg/week (subcutaneously)

and none of this seems to be helping. I was back in to see her last week and we finally have tried enough (after trialing a multitude of NSAIDs) to start biologics. I opted for the once a month Simponi and have been pretty nervous.

I'm curious to see how fast you found relief and if the meds are still working. Ideally, I am hoping to just take the Simponi and no longer have to worry about all the rest, but I'm not sure what the exact plan is yet. I am in the midst of having tests done for TB, HIV, Hep, etc. and also waiting for approval for insurance coverage. I'm hoping to start within two weeks here.

I was very happy to stumble upon this site, and this thread– It's nice to have a community of support.

Welcome Dustin! It is a great community of support.

I haven't taken Simponi but we have a friend who does. He got quick wonderful relief and says he has not had any side effects. I hope it works like that for you.

I didn't do well with MTX, Remicade, Humira, etc. I took Imuran for years for my Lupus and all of a sudden out of the blue developed an allergic reaction so I am not taking anything at this time except Plaquenil for Lupus.

Best wishes to you for relief with the Simponi. Come back often and let us know how you are doing.

Blessings.
Possi

I am taking it now, but might be switching. WHen it works, it works good. I had some good months, but they are a thing of the past. It kicked in by 4th week of the first dose (last June) and in 3 months, was doing pretty well. It has always seemed to run out of steam before the month was up. This winter, it seems to run out 5 days before end of month, then takes a few days to get back up to speed. So after 9 months, I may be switching since I can't see all that cost for 2/3 of the month relief.

Another member, Drizzit (and his son) are on it and doing great after after 2-3 years. Maybe he will chime in.