Thanks so much for the add. It’s been really helpful reading old posts so far. My husband received a (still tentative) diagnosis of PSA today after 1.5 years of hopping around to different specialists. He has severe pain in his hips and SI joints, primarily, with bad foot pain in the mornings. He’s also always had what he thought was eczema, but what might actually be psoriasis. He’s been prescribed Enbrel but we’re waiting to hear if insurance will cover it or if we’ll need to start with methotrexate. Hoping they will cover Enbrel as this has been very debilitating and my understanding is that methotrexate takes longer to start taking effect.
In any case, we’re both a little nervous about either of these medications, but also recognize that he can’t keep living in this much pain/restricted mobility.
Would love to hear people’s experience with Enbrel, particularly people in their 20s/30s, and people with primarily pelvic/back/hip pain.
Hi - I’m sorry I can’t help with Enbrel but I’ve been taking Methotrexate for six months after being diagnosed with PsA. It works and you’re right, takes some time to get going! Up to 12 weeks in fact. I’m in the UK and not sure where you are but guess it’s not here if you need health insurance. My Consultant is fab and has never let me suffer pain if at all possible. As soon as I saw him he put me on Methotrexate but also gave me an intramuscular corticosteroid injection that took away my pain within a couple of days and stopped me suffering while waiting for the Methotrexate to kick in. He also gave me another corticosteroid injection directly into my right knee joint (I couldn’t walk at this point). My worst affected areas are hands, wrists, knees, feet with some shoulder and pelvis involvement. Perhaps this could be a solution for your husband if your insurance won’t find a biologic like Enbrel. I’ve just come off Methotrexate as it isn’t working as well as it did before. I’m about to start a Clinical Trial of biologics but neither biologic is Enbrel so I won’t be able to help you with this. I know others on this forum do use Enbrel with much success. I hope someone who does will reply to you. Best of luck
Enbrel was great for me, my onset started with back / axial pian and grew from there. MTX works for some, but did very little for me, particularly on my large joints and back (seemed to help my hands a bit).
I also found Enbrel helped a lot with brain fog and depression that I’d developed (it took me nearly a year from onset to get the Enbrel).
If you have to go through MTX first and it isn’t working, try to think of it as getting one step closer to something that will.
Welcome and good luck, you’ve got what is often the hardest part done (diagnosis), as long as you are persistent, (fear the disease, not the meds) things will get better
Hi there @Nco and Jen75… Firstly I have no experience as yet with Enbrel (am hoping that might be my next med to try if the current doesn’t do the trick), but I have been on Mtx for a little over a year now.
I found your comment (Jen) about the Mtx interesting, it has done little for me too… except it has cleared up the psoriasis (which was only mild anyway), and reduced the fatigue (just a tad), and, like you Jen, it also seems to have eased off the hands a bit… I’d be reluctant to say it has helped much else for me, and certainly done nothing for my spine. On a positive note though the side effects have been minimal, and copeable with some minor adjustments here and there, mostly to the time of day I take it (late at night), drinking lots of water, and increasing folic acid.
It does seem to be very helpful for some though, so definitely worth trying if Enbrel isn’t approved. Will keep my fingers crossed for your husband that the Enbrel comes through… it’s awesome to have a rheumy that is willing to try for it at such an early stage. Best of luck!!
Hi Nco, and welcome!
Can’t say I have age in common with you as I’m 64, but I can tell you Enbrel has worked really well for me for a few years now. I don’t know if age matters as far as effectiveness, but I’m not an expert there. I hope your husband gets approved for it, but, like others have told you, MTX works well, too. It just seems to have more SEs for some (haven’t heard of many SEs from Enbrel).
Good luck—it’s great the specialist at least prescribed Enbrel, it’s a start. My dermatologist had to get proof from my rheumatologist when she applied for Enbrel. If insurance doesn’t approve it, maybe the dermy and rheumy will need to work together on the order.
I’m not Enbrel, but a biosimilar of it - so basically the same (I hope!!!). I took the injection one day and felt better the next. That’s not the case for everyone or even most, and while I have some days when I can walk better than others, the pain is A LOT less - I would say 75% less in my knees, almost 100% less in my hands and wrists. I can even shake hands without warning people to be gentle first! Good luck!
Thank you all! It’s been really encouraging reading all of your posts. Still no word from insurance; hoping to hear this week.
While we are waiting to start medication, are there any non-medicine things that have been helpful for managing pain/symptoms? Google searches have yielded some interesting possibilities (e.g. arthritis socks and night splints for foot pain?) but I’m not sure how to weed out the quackery from the potentially helpful…
Thanks for your reply! Do you think injections would be a possibility for the hip joint? I’ll ask my husband to contact his doctor about that…I have several relatives with RA that get a lot of relief from injections but hadn’t found anything about that for PsA yet
Icing neuropathy pain helped my feet a lot. Gentle exercises helps somewhat, but it’s hard to get motivated when you’re too tired to stand up!
I take CoQ10 and fish oil—not sure if they help the PsA pain at all, but they can’t hurt.
I’m wondering if anybody has good results from glucosamine?
Hi there, I’m sure they can give injections (corticosteroids) into any joint. As well as intramuscular injections into the gluteus maximus muscle (the bum basically ) that slowly goes into the bloodstream and relieves pain throughout the body. There’s no harm in asking. Corticosteroid injections are used for a wide range of problems not just RA. They can be given for osteoarthritis, sports injuries etc., as well as any form of inflammatory arthritis such as PsA. Good luck! The relief from them is enormous! Kx
No, not glucosamine- have you tried Turmeric with black pepper and Vitamin D3? Very anti-inflammatory. Also my Consultant recommends fish oil but only Omega 3 fish oil, not cod liver oil. That’s also very good for reducing inflammation and for easier mobility. Kx
Have a look at the complementary thread when you get time… in the meantime;
wheat packs, which can be used hot or cold,
warm bath / shower,
gentle exercise /PT / Physio
traditional heat rubs / sprays, like tiger balm or arthritis spray (I find most arthritis sprays useless, but did find one I think is helpful) can simply distract your nerves away from the pain with intense heat
meditation (headspace has an excellent, but paid app, which has a guided pain meditation pack - but you have to do the basics pack first).
Counselling / psychologist
I also use melatonin to help my sleep quality - but that’s prescription, so not strictly complementary.
And sleep. Lack of sleep will always make the pain seem worse, but in me it seems to guarantee a flare too.
Happy to report that we’ve just been approved to start Enbrel!!! I am thrilled that we’ve gotten insurance approval so quickly, but also a little nervous about starting the drug during flu season.
How nervous/careful should we be about the risk of infection? Are there any particular signs to watch out for? Of course we’ll talk to the pharmacist today when we pick up the medication.
Also, this is the first time my husband’s used an injectable medication - any tips for that? We opted for the “pen” version rather than the syringe to start. Our doctor recommended taking the meds out of the fridge for an hour or so before taking it, to minimize discomfort. Any other tips? Is there a time of day that’s better than others to take it? Are there any side effects soon after the injection that we should plan for?
I so hope that this will start to help my husband quickly, as right now walking is so challenging and painful. Thanks so much for all of your comments and suggestions; I am so happy to have found this group!
Let it sit on the counter to get the chill off it. Or sometimes I pop it under my armpit or tuck it in my bra. The pens can sometimes be quite forceful whereas the syringes are controlled by you, so you can vary the rate of delivery. But then again some people are weirded out by giving themselves a shot, but I prefer it. (Although the Cosentyx auto injector is superb and doesn’t leave a bruise). Some people sometimes get a little reaction at the injection site. Sometimes a bruise, sometimes some itching. Benadryl cream tends to work well if you get the itch. I find the flabby bits of my stomach work the best. Pinch an inch (or two) and away I go!!
I don’t think there’s any other specific advice about when to take your shots. I’ve taken them in the car (I wasn’t driving), right before jumping in the hot tub, in bed, first thing or last thing at night, and most typically standing at the kitchen counter! Just don’t freak yourself out by overthinking. You’re giving yourself a shot that, usually, lasts a month and which comes to you in a self-contained delivery device. So, you know, what can you mess up? Take the cap off, press to skin, hit the button, wait for it to do its thing. Needle retracts. Woo hoo, you’re done! GOOD LUCK!!!
That’s great news, Nco!
It’s subcutaneous, and you or he can inject it with no problem. I use the auto-injector pens, too. Instructions will come with the pens…once you push the button, it takes 10 - 15 seconds for all the med to go in and then it clicks.
It helps to let the alcohol dry before you inject, but it still might hurt a little. In fat, sometimes it bleeds and sometimes not. Some (very few it seems) have an allergic reaction…most of us seem to have a little reddish blotch at the injection site the first few injections, but if Enbrel works, the reddish blotch and a little injection pain are a very small price to pay to feel better!
I’m so happy you (he) is hopefully on the path to being well! Good luck!
Yep - definitely leave it out to warm up. I also second the flabby bits on my stomach for location (contrary to a lot of what was in the old packaging which says thigh, my Rheumy told me to use my stomach - the shot is supposed to be into fat - the more fat, the more consistent the release over time he told me - suppose it depends a bit on your hubbys body composition).
I found it stings a little, but I focus on it taking the PsA pain and symptoms (as well as damage) away, then the bit of a sting is easy to get your head around .
My experience has been that it hasn’t had much of an impact on infections (except the symptoms with garden variety colds have been much LESS severe). Though you’ll probably get info from the docs, some of the biologics can have nasty interactions with a couple of specific viruses, such as Chicken pox, and I have to admit the flu is not much fun (though it never is - I’m really not sure biologics made it any worse in my case). I’ve traveled a lot in basic conditions in developing countries and had Salmonella and dengue whilst on Humiral, each time I got on top of it fast and had no more problems than the next person.
The only thing to remember is that all that advice out there about not taking antibiotics unless you are really sick etc… is not for your husband anymore, if he gets a bacterial infection, antibiotics should be started (he’s now among the group that the healthy people are supposed to protect by them not taking antibiotics at the drop of a hat). Also be sure to get a flu shot, but remember it’s not 100% effective (I think it ranges from about 60-80% depending on the year).
Gosh @Nco, I’m sooo very pleased to hear the Enbrel has been approved!!!
As mentioned above I haven’t any experience myself with Enbrel, but, I have read a lot of others (on this forum) experiences with it and from what I read it is possible that your husband could start to notice a difference anywhere from 24hours to 4 days out from the first injection… not everyone has such a quick response, but it seems some do… I will be keeping my fingers crossed for your husband that he does get a rapid and excellent response to it!!
Please do let us know how he gets on with it!! I’ll be following with great interest as I too have a lot of trouble with my hips and lower spine that to date nothing seems to have done a lot for, and am hoping I might get offered Enbrel soon
) that slowly goes into the bloodstream and relieves pain throughout the body. There’s no harm in asking. Corticosteroid injections are used for a wide range of problems not just RA. They can be given for osteoarthritis, sports injuries etc., as well as any form of inflammatory arthritis such as PsA. Good luck! The relief from them is enormous! Kx