Someone please tell me this goes away after a while. I’ve had swollen glands in the back of my neck and a major headache since starting this med. I’m positive it’s a side effect, because about an hour after taking my dose it appears again. I take ibuprofen and it subsides…but it’s hellish!
I put a call in to my Rheumatologist and went in to see my normal doctor yesterday. She did blood work to monitor and see if I have something going on and told me to push through taking the meds this weekend and see how I feel Monday.
Is this a case of “it will get worse before it gets better”?
Are you drinking enough liquid? Most of the side-effects to DMARDS can be alleviated by drinking more water. When I started sulfasalazine I would drink at least 500ml/1 pint with each dose .... avoided the headache entirely and quickly helped with the nausea. Definitely worth trying to drink some more to see if it helps.
Jules is correct on the water thing. It is extremely critical.
The other thing that one has to ingrain in their mind is that PsA is a very SERIOUS and Progressive disease if not treated. The simple meaning of that is no matter what it is like today it can and WILL get worse much worse if not aggresivley treated. To fight a serious disease takes very powerful medicine. Powerful medicine will let you know it is there. That means there are side effects. With the PsA meds they almost always go away as your body gets used to it.
I recently completed a go with chemo for cancer. Now there was some serious side effects from meds. The alternative however wasn't good. So let me ask this a headache that goes away with ibuprofen and some swollen glands that may or may not be a side effect of the medication vs being completely disabled in constant pain unable to use your hands and feet. Which would you choose because that IS the choice here. There are other alternatives of course but they also carry similar risks. The rheumy and/or nurse was very correct in telling you to carry forward and see where this lands.
I understand people just starting serious treatment for this disease's concern about side effects. Medication is the first thing they have control over. Developing a long term view is the hard part.
Above is a picture of 26 years of progression before the "meds" of the spondylitis form of this disease (and it is far from the worst form) I suggest Everyone print it and past a copy of it on their water bottle and their medicine cabinet
One good "med" that hasn't given me side effects, except for a red area around the injection site the first few times--which to me isn't a SE--is Enbrel. It hasn't harmed my liver, I haven't caught any bad "bugs" -- other than a couple colds that didn't even require antibiotics, and I feel good!!!
tntlamb said:
Jules is correct on the water thing. It is extremely critical.
The other thing that one has to ingrain in their mind is that PsA is a very SERIOUS and Progressive disease if not treated. The simple meaning of that is no matter what it is like today it can and WILL get worse much worse if not aggresivley treated. To fight a serious disease takes very powerful medicine. Powerful medicine will let you know it is there. That means there are side effects. With the PsA meds they almost always go away as your body gets used to it.
I recently completed a go with chemo for cancer. Now there was some serious side effects from meds. The alternative however wasn't good. So let me ask this a headache that goes away with ibuprofen and some swollen glands that may or may not be a side effect of the medication vs being completely disabled in constant pain unable to use your hands and feet. Which would you choose because that IS the choice here. There are other alternatives of course but they also carry similar risks. The rheumy and/or nurse was very correct in telling you to carry forward and see where this lands.
I understand people just starting serious treatment for this disease's concern about side effects. Medication is the first thing they have control over. Developing a long term view is the hard part.
Above is a picture of 26 years of progression before the "meds" of the spondylitis form of this disease (and it is far from the worst form) I suggest Everyone print it and past a copy of it on their water bottle and their medicine cabinet
Grandma J, you were so lucky going straight to Enbrel via your dermatologist (I say this but not without concern for the damage you have for not giving in to the nagging to start treatment sooner) but for most people on the rheumatology pathway this involves having to try the DMARDS (methotrexate, sulfasalazine, leflunomide) first before progressing to the gold standard biologics.
My experience, and this seems to be the case for lots of people, the DMARDS do have more side-effects but I've learnt it's important to stick with them and try to manage the side-effects as best you can to see if they pass. Unfortunately I seem to have quite adverse side-effects and ultimately had to come off all three but like you the bio's seem to be fine .... I don't even get injection site reactions. Amazing considering how sensitive I am to so many drugs .... just goes to show!
Tntlamb, I love that graphic. I'm printing a copy to carry with me to my appointments. I've met a few doctors who seem to think I'm over-reacting in my concerns about the damage that PsA can and will do.
Missmuffin72, just keep drinking water. You are going to be fine and if not it will be time to try the next treatment :)
Those pictures are sobering. But they are a good reminder of why we chant “Fear the disease, not the drugs” around here, and why I often tell people to take the most aggressive treatment that your rheumatologist is willing to prescribe. Just take it. Give it the best go that you can, even if you need to ride out the side effects. The treatment may feel worse than the disease at this point, but it’s nothing compared to what this disease, if left unchecked, can do to you.
If you were to compare my side view to that of the guy up there ^^^ you would see someone who stands tall and straight, with no visible damage. I’ve escaped his AS-crippling fate, thank goodness. But (you knew that there was a but coming!) my full-body x-ray would tell a different story: two knees that have been totally replaced, one titanium hip, a hip that is bone-on-bone and on its last leg, and two feet that are damaged beyond repair.
I was undiagnosed for about twenty years. During that time I had aches and pains and fatigue and joint pain, particularly in the knees. Nothing that I couldn’t live with, and I did. I guess you could say that I had mild PsA, and if I had been diagnosed, I might well have foregone any kind of aggressive treatment, thinking that it was easier to live with my aches and pains than with what the drugs might do to me. But I didn’t know what I had, so there was no decision to make. Then, suddenly, my knees went south with OA, and they were replaced. Ouch, that smarts. After my knees went, somebody realized that there was a problem, and I was diagnosed with PsA, but the rheumatologist thought my disease was mild, and I was treated accordingly. Within a year of diagnosis, PsA had finished off my hips, and made a good start at my feet. That’s when I got aggressive treatment. If I’d been diagnosed correctly and treated aggressively from the start, I might never have needed my orthopedic shoes and my mobility scooter.
I don’t doubt, Missmuffin, that you are feeling rotten on sulfasalazine, and I’m sorry. It’s bad, I know, I’ve been there too and it’s no picnic.
How am I now? I’m now on one of the biologics, annd aside from the fact that I can’t walk or stand for more than about five minutes at a time, I feel better than I have in two decades.
Fear the disease, not the drugs. Accept the most aggressive treatment that your rheumatologist will give you. Ride out the side effects, if you get them. Hang in there. And hang out here.
I'm pretty sure my back was headed that way and I definitely would have looked like that in a few years. Oh, maybe I will anyway because my spine has been damaged. Before I went on Enbrel, my lumbar spine was sooooooo stiff. It was nearly impossible to start moving after sitting in the car or a comfy chair for more than a few minutes, and getting out of bed in the morning (or just changing positions during the night) was actually scary it was so painful. That was when I felt like I was 90 instead of 60--no, wait--more like 100 because my mom's 90 and she doesn't feel like that!
My dad had osteoporosis and looked worse than those pictures for about the last 10 or 15 years of his life. He had celiac disease and he didn't follow the diet very well, so he was very thin. He was never diagnosed with psoriasis, and other than his back, he didn't have any swelling or complaints of arthritis pain. However, all his adult years he had weird fungus toenails, which didn't respond to anti-fungals. And, I remember him having really white dry legs, and dry patches of skin on his arms. I've been wondering for a long time who in our family tree I inherited psoriasis/PsA from. I hope I don't get his spine, but my doctor said I'm over half way to osteoporosis in some of my bones--my lumbar spine is one area affected. Yes, do as all of the above have suggested. You don't want to be sorry later. I don't even want to think of how much worse I would be now had I not started Enbrel last year. I think I was like Seenie in that my PsA was mild and sporatic for many years, with moderate psoriasis. Suddenly at about 55, it sped up and I was diagnosed. Jules, I was really scared of methotrexate because my mom had bad SEs from it (polymyalgia) and when my rheumy almost convinced me to try sulfasalazine I was scared because my stomach doesn't tolerate nsaids. It took my rheumies 5 years to convince me--actually you people convinced me--and then I ended up going to my dermy to start Enbrel because I heard it was easier to get it through the dermy. Why, Idk, because as I've said a million times, I could tolerate psoriasis, but PsA was the pits!
As long as side effects are not dangerous, sometimes it can be worthwhile to wait them out. Do keep talking to your doctor about this. Sometimes if a med works, the side effects just need to be tolerated. I’ve had two meds that have given me uncomfortable side effects.
MTX I felt like I had morning sickness for the whole six months I was on it. If the med had worked, I would have stayed on it. But it wasn’t making a difference. Leflunomide I wound up with the runs, so we decreased for a stretch and the side effect disappeared. That med worked and continues to work, so I was willing to tolerate quite a bit. In both cases I kept in contact with my rheumy about my concerns.
Yes, good advice Stoney .... it is really important to keep the communication going with your doctors.
I did several months with methotrexate and like you would have persevered longer if it was helping especially as I was soon to be 'on track' here learning about the benefits of water ;). Leflunomide was much, much longer over eighteen months (and this may be something I revisit in the future at a very low dose) but oddly it was sulfasalazine where I lasted only 25 days but that is because it became apparent my rapidly developing reactions were more than a manageable side-effect and I'm now written up for a true adverse reaction to sulfonamides.
Looking back I think for me so long as I knew that the side-effect was harmless, I could quit worrying, manage a short while of feeling a bit icky and focus on the benefit the treatment was bringing to my PsA.
I also suggest you stick with it. I was on Sulfasalizine for 2 months. The side effects were awful, but I did find out I am allergic to sulfur meds. I think even with the side effects, I would have waited the 6 months if I wasn't removed from the medication abruptly (minus the allergy of course). The medication was really working on the stiffness and pain. You can ask all these ladies how much trouble I have had with "The Gap"! I'm now on Enbrel, have been for 6 months, and I am just now finding some relief. I still have side effects and the problems associated with PsA. I don't like taking the medication, but I do. I'm 33 and if I don't get this under control now, what will it be like when I am 60?
Hehe, Seenie! Well, I would love to be more like you, minus the PsA, when I am 60 ;)
Aside from that, it's very important to talk with your doctor. I go in with a list of questions. I have bad "brain fog" and it gets worse as my pain increases throughout the day. I keep a note pad on the counter to write down things doc and I need to talk about. Then I ask hubs if he has any questions or remembers anything I left out. It's hard at first. I was in so much pain and depressed. I wanted results right away! I had been in pain so long that I didn't want medications that would make me fell worse. I kicked my feet (and still do).
Now I know that you have to play the waiting game. I hope at 1 year out on Enbrel I can find some more relief. It's still hard.
My rheumatologist gave me a great quote to live by: "It takes half the amount of time you have been in pain to heal." It sounds horrible but it's true. If you have been in pain for years, it might take years to find remission. Just take it day by day. Good luck!
I’m on mtx which is different but had chronic 4 day headaches after every dose! This lasted for 3-4 months but am happy to report all is well in terms of headaches now. Unfortunately it doesn’t seem to be working for me but the side-effects from it are completely gone.
