So, the pain has returned. Not full force and not accompanied by fatigue, but my old friend is back. 6 weeks after my third Stelara shot. Should have lasted 12 weeks. Now what? I am waiting to see if it will get worse or if it's something I can control with medication, IBU, tramadol, etc. At first I thought it was a flare, then a thought maybe the weather (it's turned fall here), but it's still here. Making itself comfortable all over again.
I will say I had an amazing 6 weeks! I traveled, gardened, did some home decor, arts and crafts, and some sewing. It was great! AND I am tired. I wish I could feel like that everyday.
Aw, so now it's another 6 weeks til your next dose? Hmmm, maybe over time--I mean accumulating doses, you will get longer results. Idk anything about Stelara, but ppl say it can take up to 6 months to see results from most of the biologics. I was wondering why you started on stelara instead of one of the weekly or twice weekly biologics?
I started on Stelara since it was on the weaker side in the biologics range. I like to start simple and easy and go from there. If Stelara isn't for me, at least I tried. Yes, I have heard after more doses you can get better results, but goodness! I do feel like a guinea pig these days! The returning pain is easily aided with minor medication. I have my next shot in 6 weeks and Rhemy appointment soon after. I'll bring it up.
I am trying to get some projects done early, like my son's Halloween costume, just encase the pain is back for good. I've never had xrays taken either, I think it might be time.
Amielynn, I don’t know how it all works with Stelara, but I do know that for the first, oh, half year or so of my taking Enbrel (weekly), there was a “fade” about half way through the week. I injected on the weekend, and by Wednesday I was thinking that it wasn’t helping much any more. I mentioned this to the rheumatologist, and he just said to hang in. I did, and eventually, the “coverage” lasted all week. Now, I do not notice any differences from day to day. That doesn’t mean that I don’t have periods of time when I ache: this disease waxes and wanes, even when you are on good drugs.
Hang in there! But I know, six weeks is so long when you’re uncomfortable!
Thanks Seeenie. I am willing to do more ejections. I do like the drug, I just hope I get more then 6 weeks out of it. Like I said, the pain isn't as severe as before and can be managed. I just hope the fatigue doesn't return. That was awful!
With a med like Stelera that requires a loading dose, your first shot is really your third shot. If you in fact got six weeks from it that is amazing.
Now I suppose you are wondering about the first two shots? It may have been the medicine directly, it may not of been. There is an interesting effect of biologicals, that while their ultimate job is to bind to proteins and essentially change the dna your immune system is responding to they don't always work that way. There is something "new going on in the body and the body basically has a what the hell moment and the immune system doesn't know what the heck to do. so it does nothing. People have had it happen driving home from the doctors office only to discover 6 mos to year even more later the med "quit working" Recent research has pretty much determined they NEVER were working.
Rather the body jad a reverse Koebner effect. This happens a lot with PsA women talk about going into remission during pregnancy, an injury, sickness, major emotional event have all change the course of the event. IF we could bottle that effect, we'd really have something. We know it works we don't know why. Thats the trheory behind DMARD med, TENs units, spinal cones etc. Confuse the body.
This really doesn't apply to you amielyn in that yeah you had a an early response BUT yhere is every indication you are going to have a very successful relationship with this med. BRAVO
There is some studies in early phases where they are taking patients who had an early response to Biologicals, and later failed them that after a while and several others they go back and do a second trial and BOOM they work (are you reading Michael?)
TNT, thanks! I had no idea and didn't look at it from that viewpoint. I guess I should be excited!! I was starting to feel a little failed. During all my pregnancies I went into remission. It was lovely. Though my docs seem to think there is a link between my premature baby and failed pregnancies and PsA. There isn't much research out there, and I understand why, but my body does not like to be pregnant.
I didn't have PsA during my pregnancies, but during one of my 4 pregnancies my psoriasis completely cleared up. I don't think it's psychological--it would be great if someone could figure it out! It has to be a combo of chemicals, hormones, and I'm sure a few other factors. I think if we patients could get together and combine all of our experiences maybe we could figure out what specific things are more likely to cause flares and remissions--we could figure it out better than some scientists asking a few questions of people and trying to come up with answers that way. I do have faith in scientists and the research they do--I just wonder why they don't come up with a cure. I remember years ago I told a doctor that I thought psoriasis came from within and it wasn't just on the skin. He about told me I was nuts and that scientists knew a lot more about the disease than I ever could. Hmmmmm, funny how several years later it came out as an autoimmune disease!
I wish I understood it better too. I don't *think* Humira worked for me, although with the benefit of hindsight I realise my knees got a good bit better around about the time I had my 12 week trial but that might have been co-incidence. Simponi, however, made me feel lots better by the end of the first week and for around the following two weeks but has dropped off since then and as time goes by I'm beginning to wonder whether it is doing very much at all.
Have another four months/doses before I'm due to see my rheumy consultant again so I'm going to stick with it and see what happens in this time.
Lamb, is there any more information on these early phase studies? I'd be really interested to have some info for when I see my doc in January.
tntlamb said:
With a med like Stelera that requires a loading dose, your first shot is really your third shot. If you in fact got six weeks from it that is amazing.
Now I suppose you are wondering about the first two shots? It may have been the medicine directly, it may not of been. There is an interesting effect of biologicals, that while their ultimate job is to bind to proteins and essentially change the dna your immune system is responding to they don't always work that way. There is something "new going on in the body and the body basically has a what the hell moment and the immune system doesn't know what the heck to do. so it does nothing. People have had it happen driving home from the doctors office only to discover 6 mos to year even more later the med "quit working" Recent research has pretty much determined they NEVER were working.
Rather the body jad a reverse Koebner effect. This happens a lot with PsA women talk about going into remission during pregnancy, an injury, sickness, major emotional event have all change the course of the event. IF we could bottle that effect, we'd really have something. We know it works we don't know why. Thats the trheory behind DMARD med, TENs units, spinal cones etc. Confuse the body.
This really doesn't apply to you amielyn in that yeah you had a an early response BUT yhere is every indication you are going to have a very successful relationship with this med. BRAVO
There is some studies in early phases where they are taking patients who had an early response to Biologicals, and later failed them that after a while and several others they go back and do a second trial and BOOM they work (are you reading Michael?)
Amielynn, don't give up on it yet. Just the fact that you aren't so tired must mean it's doing something. My fatigue and stiffness are almost completely diminished and I'm satisfied with that. There is still pain in places, but more tolerable. If the really bad stiffness returns, I'll think Enbrel stopped working for me--well, hmmm, idk--I guess that would have to include worsening psoriasis, too.
I have had this same thing happen and once you get to a long stretch with the same drug maybe it will get better. I am glad I kept it up with Enbrel, wasn't enough but the best relief so far.
I have lately been in a place with one after another all less-successful drugs and had just been wearing me out, trying to find one that will ease the swelling.
Last time I tried to keep on a drug it was only helping the first of four weeks. It's hard to have patience but I am learning to ride it out, I don't won't to miss the best one and kept trying for several months but after all that my condition got much worse. On to Remicade.
Maybe if you're on this one a while it will work better since it does work a moderate time.
Thanks everyone. I will hang in there and keep going. I am hoping after a few more injections, I'll see more relief. It would be amazing to feel 32 again!! Though, I have always felt older, so I have no idea what 32 feels like, lol!
Dot, I hope you find some relief soon. I have had only very minor swelling of hand knuckles. I'm not sure how I would handle major swelling in major joints. I keep telling myself how luck I am to not have so much swelling, but I am sure it's something I will have eventually. I hope Remicade works for you.
Honestly, these biologic drugs are all new to me. I need to read more about them. I would love to know how they work on the immune system. Or "freak it out" in any case. My Psoriasis was better but is getting worse again. Did it find a way around the biologic? Did my immune system figure out Stelara or did the shot wear off enough to let something through? Does stress make the immune system stronger or make the biologic weaker? All interesting questions....
yes Lamb I am reading this. I re-tried Enbrel after being on Simponi for a year. I got a good 6 months out of the second run which wasn't bad.
I find Stelara waxes and wanes. I still have flares on it but then wham the flare is gone. A bit odd.
Some of the researchers do have PsA or have it in their family. That's how they get interested in it enough to devote their lives. Ny Rhuematolgist has it.
One of the nice things about reaearchers involved is some of the anecdotal evidence gets a good long look. Why it may not seem like a lot, now that we know that actually developing antibodies against biologicals is so rare, that its almost non existant, we have learned about multiple mechanisms and have developed multiple meds. Imagine if we can somehow combine the il6, anti tnfs etc into one med leaving the autoimmune system no where to go..... I have even heard talk of an arthritis immunization because thes meds do work the second time around.....
Very interesting Lamb. I will need to think on it. If building antibodies to the biologics is rare does tha mean I just haven't found one that works for me yet? Or maybe Stelara will be it.
I suspect the real answer for you Michael is you have a very strong and tenaciuos auto immune system........ One of the kids I was around at Arthrits camp fought with her immune system for 3 years rejecting her kidney. She woke up one morning and said it was like her body said okay if you want that kidney so bad keep it..... Her counts went to normal and have been that way for two years.
Her older sister however, who donated the kidney and had no sign of the disease has since developed it and is losing her remaining kidney........ We have it so good compared to these kids.
yeah we really do. And I am so proud of the work you are doing with them. I use to work in isolation and was very proud of my good immune system. It is ironic that that strong immune system has now got me!
I had a tree come down and was out cutting it up.with my barrey powered chain saw. (don't ask) I have a mixture of batteries. from the old nic-cads to the new lithium. there is big difference. with the nick cads I saw and saw and finally realize that the battery has lost so much charge that I can see the chain going around. The lithium last longer and the saw never slows down. When the battery no longer drives the saw at full speed, it just stops. I love the lithium for the chain saw, but I love the nic cad for my screw driver. I'm finding these meds to be a lot like those batteries. Some are nic-cad, some are lithium.
Love the comparison TNT. I wasn't sure you were posting on the correct thread for a bit.
I do think I have a super strong immune system. So strong that's it's attacking me! It would be interesting to learn more about developing anti bodies to biologics. As there been a study? Have a link?