Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications My update on Simponi

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