Hello,… I have just been switched to my second biologic after 12 years of being on Enbrel. Well I am going on six weeks on this new one and I feel worse than I did at the end of Enbrel. Very sore, tight, slight pain and many joints are angry. How ling should I wait to see if this working. I feel something else is going on? How long has people been on a new biologic before they call the doctor?
So sorry to hear of your issues with PsA and in that gap of not having what was doing something and waiting for the new one to kick in. I don’t know that there is a standard answer for you but I suspect six weeks isn’t long enough. I went 6 months before Rinvoq started to work and I wished I hadn’t quit Humira during that time of hoping the new will be better. Your rheumy might put you on something else in the waiting and others have done low dose prednisone to get through it. I’m in a similar place of being pretty miserable. I have to be off Rinvoq now for another 5 days before I can start Simponi and I’m dreading this gap…Just about every joint is aching during some part of the day. Hang in…what choice do we have? Thinking of you and will say a prayer when my joints remind me to!
The first review date for humira is 12 weeks. Other biologics have a 16 week first review date. And that’s for the smallest of improvements. When we start a new to us med, often our bodies do have a little temper tantrum for a short while, which in the absence of anything else other than worsening of your PsA symptoms, sounds like what’s happening to you.
None of our meds work fast sadly. Has the review appt at 12 weeks been scheduled?
yes but it not till December. I have emailed the doctor this morning asking if this is normal. I usually don’t complain to him so when I do ask questions he tends to take me se
got a call back from the nurse and he is going to look and see what he can do knowing I have had reactions to some meds. with the unwanted stress I am having due to some other things it is not helping. the pain right now is shoulders and back of neck and I am believing it is tension and I told her that.
I was on Embrel for some time and was eventually changed to Humara which did not serve me well at all. I was on a couple of others that either caused infections or other problems. Im now on TREMFYA after being on Stelara. Stelara worked fantastic for reducing pain and symptoms, however I had constant serious infections. TREMFYA is working well but still suggering a bot of stiffness snd joint pain. I would say give it six months. That is plenty of time to know if it is good for you or not.
what does one do if you feel you have developed antibodies. i am on complete lockdown. cannot move shoulder, feet are all swollen and frozen shoulder, amongst other joints🥲
the doctor had called in a slow long taper of predisone but now after reading I am wondering why he did not start me back on mtx to help with antibodies
so confusing also had my flu shot two weeks ago and that had kicked my b&&& as well. wonder if my body is fighting two shots?
It’s very unlikely you would have developed antibiodies yet to this med. That tends to happen well after a year or so on the med. Sadly all antibody tests are nortoriously unreliable too. Sometimes a med simply doesn’t work for you for other reasons too. I had to try three biologics before the third one worked. Sometimes we just have to search a little harder or wait a little longer with our meds. The tapering steroid dose is a good plan. Given you’re only starting humira.
well he took me off of it after 12 weeks and starting Skyrizi. I never did an antibody test but every week I was become more and more sore and could not use my arms or legs. The pain level was a 10 plus and I am not back on crutches for my ankle swelled to half the size. The tapering put me back into “lock down” do I am basically just waiting to see how the new one will work. I was on Enbrel for 12 years and within the last six month my fingers started to get deformed, one toe is a sausage, the right thumb is swollen and MRI showed bone loss, ankle issue. I was on 40 mg of prednisone and tapered down after four weeks to 5 but after I hit 15 the pain and inflammation came back. 5 is like candy…going to the office on Monday to do the loading dose and I don’t know much about this drug but he chose this one for the psoriasis and the joint pain. The entheasis is out of hand and nothing is touching is at this point.
That’s so frustrating. I hope you get some relief soon. It’s very wearing when it’s bad like that
You got twelve years of enbrel. That’s impressive
Hang on in there. Here’s to hoping Skyrizi is much better for you. A tapering dose of steroids is just that - tapering. So at the end the dose is too low to be of help. They taper it so as to not shock the body by suddenly stopping the steroids. And those antibody tests are so unreliable there’s nothing lost by not doing one.
so what is the suggestion to get help from something till the biologic kicks in. does one have to be in full body pain, stiffness and achy the whole time.
It’s a double-edged sword frankly. They could delay the taper down of steroids until a med kicked in leaving you at a higher dose of steroids for longer but that puts you at greater risk of osteoporosis fractures, given steroids leach the calcium from your bones. And believe me you don’t want that as well as uncontrolled PsA as that happened to me. 7 fractures over a two year period whilst trying PsA meds none of which were working either. It was grim to say the least.
And they could maximise your anti-inflammatory meds and pain meds instead but you guys in the USA have issues with pain meds understandable given your opiod crisis.
Are you taking any anti-inflammaories like Arcoxia or Celebrex? And what about pain meds, have you been given something like Tramadol, codeine or oramorph?
Sadly this disease stinks really. It can often demand you are in full body pain, with stiffness and achy the whole time sadly until something works for you. There is no magic wand to magic it all away really. So hang on in there. But if you’re are no anti-inflammatories and no pain relief talk to them about it.
i go on monday to the doctor office for the loading dose
as of right now non pain meds just aleve. the GP mentioned beta blockers for i do for that category for high blood pressure from the pain.
the US crisis is awlful but it is the bad apples that hurt us all. now the chronic pain suffers are having to pay the price.
At least talk to your GP about more coherent anti-inflammatories like Arcoxia (Etoricoxib) or Celebrex. They can give you a measure of more comfort and ease down the harshness of your inflammation. And I’m sure your GP can do slightly better on anti-inflammatories than just Aleve if you’re merely buying it over the counter which is at a low dose of 200mg. You can get it prescribed by your GP at 500mg to be taken twice a day.
We call Aleve, Naproxen in the UK. But I think Arcoxia and Celebrex are far superior to Naproxen. First they are less harsh on your stomach and GI tract (although you still need a stomach protector like Omeprazole/Nexium) and are simply just better at working. I take Arcoxia. I get it prescribed at 30mgs and I can take up to 90 to 120mg per day. I rarely take more than 60mgs per day, 30mgs in the morning and 30mgs in the evening.
But also you need pain relief in addition. Anti-inflammatories aren’t pain relievers. Even if you took 2 Tylenol every 4 hours up the max of 8 tablets per day, you would get some relief. But you have to take it every hours on the button. Every day too.
Welcome to that age old question! I’m right where you are in the waiting game. I have months ahead of me before I’ll know if Simponi will work. Though I fight being on prednisone, even low dose, the alternative is absolute inactivity and always in pain. With just 10mg prednisone, my scalp psoriasis has pretty much cleared up. I find that if I take the prednisone at 8 a.m., it quiets the flare that started in the middle of the night by about noon, then I feel pretty good and can accomplish some yard chores etc. After about 14 hours I can tell that the prednisone isn’t holding back the joint anger. Yesterday, I used the chainsaw for an hour, swung an axe and split and stacked firewood for another hour and a half. I felt great while doing it but could really feel the PsA in my joints this morning. Perhaps AI will speed up the science on diseases.
Ahh, now, I think this can also be attributed to ‘…bit of a male thing…’ too @Amos. My ego jumps in and thinks I can do more than I probably should, ‘just a little bit more’ and that little bit is probably that little bit too much .
I say that because I tend to do the same thing . I feel all right so I keep going and going…
But come tomorrow, ohhh, that’s when I pay for it. In agony. I often say ‘some days I can leap a tall building in a single bound, some days I’m lucky to be able to crawl out of bed…’. Now, if I can look back and think ‘Yesterday I did x,y,z and that’s why I feel like $#@% today’ I can accept my agony as self inflicted because I achieved something, I completed x,y and z. But when I feel like $#@% and there is no reason or the tasks were minimal I tend to get annoyed with myself (as if I have control over it all).
I have learnt I need to be really refined in identifying when my limits have been reached and stop. I know I can push on through past those limits, but in doing so there is always a cost for doing so. I have to weigh up the cost/benefit of pushing that limit. I have to ask ‘can it wait?’ ‘could I finish it tomorrow?’ OR ‘could I just do that bit more?’ and every assessment is very individual. It’s not a simple Yes/No answer though. What are the consequences, both for and against?
These are the things we all need to ask/answer within ourselves.
Merl from the Modsupport Team
Love this @ModSupport. I call it pacing. Boring as hell but so important too. My go to when I forget about pacing is to read ‘The Spoon Theory’ again. Essential reading for all of us.
Yes, and thanks again Merl…a good reminder to one who is slow to learn and quickly gets ambitious when pain is reduced. Every once in a while I think that the morning after pain was worth it because it just feels so good to check things off of the list that only seems to grow. It does get discouraging when another week goes by and you feel like nothing got done around here. At 7.5 mg prednisone, I am quite content with the pain management but sleep is disturbed as I feel like I drank coffee before bedtime and losing sleep doesn’t work well. for me. So, we win on one area and lose ground on another. One day at a time.