Hi all. Well have been on Humira for about 3 months now. Tolerating it really well but not as effective now as was initially. That is, it seems to be wearing off after about 1 week.
Was reviewed yesterday by my specialist who said normally they would add in Methotrexate, however 18 months ago I had a severe reaction to it (along with just about everything else I've trialled) We discussed injecting it, but again she's loathe at this point as I had drug induced hepatitis 6 months ago from Azathioprine.
I'm going to trial a small dose of steroids over 3 weeks , see how I go , if all good then wait a month and triall a larger dose for 3 weeks. We haven't discussed what happens after that.
Like many of you, I AM OVER the constant pain. I would like to be able to occasionally walk for more than 10 minutes without being in agony.
I live in Australia- my Humira cannot be considered for an increased dosage until I have been on it for 6 months.
Anyone else have any thoughts /experience with Humira & Steroids (occasional use)
Thanks again for being able to share my PSA journey with you all
so sorry you cannot tolerate MTX. Steriods do give you excellent pain relief. you will love them. There can be SE's but hey all these meds cause SE's and you may have none whatsoever! I find my humira is wearing off at about day 12. I always know when it is Sunday the day before my MTX shot. I had a shot of kenalog in march because I was off humira for 5 weeks because of 2 different infections that happened back to back. So within 12 hours I was feelin much better and the pain was diminished not gone but wayyyy better. That lasted for about 2 weeks then wore off but by then I had 3 shots of humira under by belt and was on the mend. I will never turn down a steroid shot ever it works that well. As for SE's well piffle! PsA is the biggestSE I have LOL
I do know 2 people who took humira at shorter intervals. One was every week and the other every 10 days. the once a week gal was on humira for 7 years before it failed completely and now she is on enbrel with not as good effects but managing the other has just switched over to remicade after I think 4 years at every 10 days. so good luck to you I know you will feel like a million dollars after the steroids ;)
OH NO TNT! are you telling me I'll put on weight? I already tend to lay around a fair bit of the day trying hard not to eat too much given my inactivity
tntlamb said:
If nothing else, you won't have any appetite problems.
My doctor didn't seem to think it was possible to shorten the period between Humira shots but I'm gonna work on her again
2trees said:
so sorry you cannot tolerate MTX. Steriods do give you excellent pain relief. you will love them. There can be SE's but hey all these meds cause SE's and you may have none whatsoever! I find my humira is wearing off at about day 12. I always know when it is Sunday the day before my MTX shot. I had a shot of kenalog in march because I was off humira for 5 weeks because of 2 different infections that happened back to back. So within 12 hours I was feelin much better and the pain was diminished not gone but wayyyy better. That lasted for about 2 weeks then wore off but by then I had 3 shots of humira under by belt and was on the mend. I will never turn down a steroid shot ever it works that well. As for SE's well piffle! PsA is the biggestSE I have LOL
I do know 2 people who took humira at shorter intervals. One was every week and the other every 10 days. the once a week gal was on humira for 7 years before it failed completely and now she is on enbrel with not as good effects but managing the other has just switched over to remicade after I think 4 years at every 10 days. so good luck to you I know you will feel like a million dollars after the steroids ;)
Are you ta;king about your rheumatologist or a general practitioner when you say "your doctor did not know if he could shorten the interval" ? because you can shorten the interval between shots. My bio nurses have stated this fact to me on top of the 2 people I know personally that have done this as perscribed by their rheumatologists.
I have not taken oral steriods but this is what I know. Prednisone is taken orally , if taken for a short course the doctor would start you at a dose like say 10 mg on the first day slowly lowering the dose day by day or every other day until you have no tablets left. or they may give you a dose to take ever day that is the same amt and wean you off when you are feeling tickety boo. :) Either way you could have a back lash of pain and swelling but you may be just fine and not have a flare up . I didn't with the steroid shot but knew when it wore off as my pain increased (not enough to pop narcotics like candy though) It got me through until the effects of humira were working again. Personally I will not turn down a steroid shot as it really did help me out of a pain jam. Like I said and repeat I will never turn down a steroid shot. Oh and you can only have the shots intramuscularly about every 6 months or so. They do not just hand them out willy nilly. Just in case you missed this fact you MUST be gradually weaned off oral steroids like prednisone.
As for eating more well some do an some do not and some people will actually lose weight. The pain relief is worth the couple pounds you may put on. xmasmumma said:
Thanks!
Any idea how often you can take the steroids?
My doctor didn't seem to think it was possible to shorten the period between Humira shots but I'm gonna work on her again
2trees said:
so sorry you cannot tolerate MTX. Steriods do give you excellent pain relief. you will love them. There can be SE's but hey all these meds cause SE's and you may have none whatsoever! I find my humira is wearing off at about day 12. I always know when it is Sunday the day before my MTX shot. I had a shot of kenalog in march because I was off humira for 5 weeks because of 2 different infections that happened back to back. So within 12 hours I was feelin much better and the pain was diminished not gone but wayyyy better. That lasted for about 2 weeks then wore off but by then I had 3 shots of humira under by belt and was on the mend. I will never turn down a steroid shot ever it works that well. As for SE's well piffle! PsA is the biggestSE I have LOL
I do know 2 people who took humira at shorter intervals. One was every week and the other every 10 days. the once a week gal was on humira for 7 years before it failed completely and now she is on enbrel with not as good effects but managing the other has just switched over to remicade after I think 4 years at every 10 days. so good luck to you I know you will feel like a million dollars after the steroids ;)
There are a couple of ways they do oral steroids. The build you up over a week or so to 20 -30 mgs keep yopu there until things are "stable" and then wean you off.
Then there is the pak basically its the same but the "curve" is larger and duration shorter.
A lot of rheumys (and pain docs) are starting to favor the burst. No build up, no wean, 20 mg every morning for 4 or five days a,d then repeated no quicker than 2X the number of days you are taking it for (ie for 4 days wait 8) they only do this for a cycle or two. If they idintfy some very specific goint areas of "pain/inflammation" some docs will have you use a flector patch, cream NSAID, or shoot you up (Flector is very expensive so get shot up if they offer a choice, the cream is hard to come by and some insurance won't cover because of a duplicate med in it but you can have it custommade at formulary and get insurance approval)
My self I prefer the burst as I get fewer side effects.... After a week or so on the taper/paks I get constantly hungry (but do get moving pretty good trying forage for food around the house my wife just puts it up high so I do my range of motion stuff. If I'm having a particularly bad time, she makes a batch of brownies - I'd do back flips for brownies and puts those up high, raising the shelf every day or so. Can you tell she was a resource room teacher?) Also I tend to get pretty short fused after a week or so of the steroids) One other side effect (especially for guys) after a week or so at the higher doses is you tend get in a "playful mood" which can be either good or bad.
As 2Trees said always take the offer, if it only comes occasionally, you will almost always feel better for a while. BUT you can easily over use and they loose their effectiveness.
Very much comes down to personal experience xmasmamma and how your body reacts/or not to something like prednisone. I was adamant that I’d never go on prednisone or other oral steroids. Amazing how pain and exhaustion can make you change your mind pretty quickly.
I’m coming to the end of a four week cycle on prednisone, started at 15mg daily for a week and have slowly reduced down to 5mg for the last week. In my experience it has been a very positive treatment and I have far less pain and a lot more energy. The only downside has been being constantly hungry but I’ve got plenty of fruit and vegetables to snack on during the day.
I hope you find something that can work for you and relieve that pain/exhaustion.
I've been on prednisone 8-10mg for 6 months since having an allergic reaction to Humira. I am now starting a smaller dose of it, 5mg, with enbre.l Enbrel lost its efficacy when I had it by itself 18 months ago. Like u, I can't take methotrexate. I've felt so much better since being on Prednisone I had hoped to stay on the lowish dose for ever but would in time need to increase the dose. Hope this similar combination works for both of us.
while doses of prednisone over 10mg made me hungry and fat, the lower dose doesn't do that.
I too have a Humira question. I took my 2nd shot this past week. This weekend I can barely move or walk. I wonder if I am just in a wicked flare since the Humira has not kicked in, or a reaction to Humira. EVERY joint from head to toe is SCREAMING and doing anything is a BIG essort....even this typing. Has this happened to any of you on Humira? Enbrel did nothing for 9 months so now I am on this and I do not take Mexo since it would kill my damaged intestines. Thanks in advamce. I hope things get better for you Xmasmumma!!
I was on Humira every other week & it only gave me marginal relief. I would fade after a week. I had difficulty walking & limped constantly. Like you, I could not walk for long. I am now on weekly Humira and I am walking without a limp for the first time in a year. I have regained some dexterity in my hands. I am not symptom free but it gets me to a point where I can be more active and actually get some exercise. I also ceased MTX due to a reaction & the weekly Humira still seems to be helping.
I do not have any experience with Humira & steroids concurrently. But I can say that more frequent dosing of Humira has helped me. I am sorry you have to wait for an increased dosage, I had to go through a waiting period and approval process as well.
I hope the Humira with occasional steroids works to manage your symptoms until you can get approval for increased dosage. Good Luck!
I am not on Humira any longer - now taking Simponi and Methotrexate. However I have not been doing well and the pain was so bad I called my Rheumatologist and he prescribed a "Dose Pack" (Methylprednisolone). Took 6 pills, the first day, 5 the next, 4 the next and so on. The idea is that the steroid is calm down the flare up and many people get great relief for extended periods of time. I got two days. I would go ahead and give it a try....you might get lucky!
Oh......and I did NOT gain weight. My Rheum said individuals that are on higher doses of steriods for extended periods of time (months and months) can experience "puffiness" which goes away once the steroids are stopped. My grandmother had this exact thing happen to her after a heart attack. Once off the steroids the puffiness went away.
Hi all! Sorry I haven't rplied for a while but have been really struggling for the past 4-5 days. Thought I KNEW what pain was before LOL! Have barely been able to walk for the past few days, incredible agony felt like burning sticks shoved into my legs (including my supposed good leg)
Saw Doc this am & he sent me for a cat scan as he now believes the tiny amount of PSA that showed up previously in my lower spine during the Bone Scan I had done has progressed & caused some sort of disc damge. At least I have some more drugs to worry about now so the steroids aren't as big an issue.
Hope you're all doing okay and it has helped a lot reading your comments.
Dandylyons, I'm hoping to go on weekly as well!
PSA- the gift that keeps on giving.......
Judy- I dont think I've heard of the Humira doing that but there are much more knowledgable people on here that should know - I hope things settle down for you
Many hugs to all (gentle ones of course)
Oh, and here's a tip I wish someone had shared with me ! If you are putting linament on your legs after your shower.. MAKE SURE YOU PUT YOUR UNDERPANTS ON FIRST!!!
Mind you- the burning sensation to your privates certainly clears the brain fog fast!!!!
So sorry to hear of the struggle! You have had your hands over-flowing! There is much wisdom here and many friends, please feel at home to join us as often as you can!
thanks so much SK! I have to try & be positive as much as I can cos the dark demons can take over soooo easily! Have certainly done my share of crying this week, as my puffy little red piggy eyes prove.
I know I'm still in denial , as I keep expecting to "get better", hence the disappointment & depression when all the meds seem to fail- tho I'm still hangin in with the humira.....
We have all cried, rivers sometimes, and experienced anger, yes indeed, we can even say rage! We have all been such focused, driven individuals that it is difficult to ever accept this kind of progressive prognosis, and we continue to search for the 'magic bullet' to remedy it all! Because there is still so much unknown to the medical communities and the world it only compounds the frustration.
Besides finding a good Doctor, this community is by far our best asset in dealing with what we are up against. It was such an honor to have just recently joined several groups here and so quickly be asked to volunteer as a moderator.
There is not one single person who does not empathize with everything you have talked about and even the pain and frustration that you have yet to mention.
Unfortunately there is trial and error involved with these meds, and then you consider that we have to wait 12 weeks to experience the full impact, if any.
There are brilliant scientists all over the globe working diligently on new pharmacuticals for us, just this week it was announced that 20 Rheumatology drugs were being introduced in Europe at a huge convention in Brussels.
Please do not ever be afraid or ashamed to come to us, there is nearly always someone here, or someone that will be here shortly. Start a disscussion, join in one, start your own, write a blog. Surely you have read enough of this to feel that the loving concern of these people. There's always a bit of fun along the way too!
Join us as often as you can, it really will help! Spill it out, we always have the mops handy for you!