It’s a great word isn’t it? 
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I had my scheduled rheumy meeting on Monday. It was disappointing as it was via telephone andI really felt that I was in need of thorough joint inspection. But such is Covid life. After a bit of conversation, I was told to stop Sulfasalazine, decrease Mtx from 25mg to 20 and increase Humira to one injection every week. Any thoughts on this new approach?
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Hi @Amos, ach I know how you feel - over the phone isn’t quite the same to convey how things are going. Given the side effects you were having with the Sulfasalazine, that must be good to know you might be free of the headaches soon I’ve never been on Humira before so I don’t know what to expect from that. When they reduced my dose of Mtx, it was from 15 down to 10, so it was a prettly low dose that seemed to lose control of my arthritis - maybe you’ll find the right balance with this new variation. How’re your symptoms? Are you still getting gradual improvement and sleeping ok?
Thanks @FatJoints. I’ve been having a metal taste in my mouth for about 6 weeks so I was sort of weaning myself off to see if it was the Sulfasalazine. It sort of helped, I think. I don’t know how long one has to be off a drug to notice its absence. My symptoms have been worse for the last two weeks with a lot of foot and heel pain, knees are always sore. Exercise definitely brings on increased stillness and body pain…not while being active but when at rest. Goofy eh? We need rest when in pain and rest gives pain. Overall sleep is better as the pain level is down a notch but quite frequent and longer lasting at a lower level. I feel these phone meetings with docs are on the verge of dangerous as their actions are very dependent on how a patient says that they “feel”. Not very scientific or absolute! But my blood work is all well within the normal range. I’m not too excited about the higher dosage of Humira…I wonder if once per week is quite normal?
Not permitted in the UK as far as I’m aware under NICE (the funding organisation) guidelines @Amos . They’d rather change your biologic instead, mostly in your case to something like Enbrel. Or titivate your DMARDs. But I do hear lots of people in the USA are on it once a week.
Regardless, I so hope your new regime of no sulfasalazine, reduced mxt and increased humira starts to work for you. If it doesn’t in the next 3 months, in your shoes I’d then be saying quite definitively that it’s apparent humira isn’t your med and you need to try another. Neither humira or enbrel worked for me but Cosentyx does. It’s so often such a trial and error journey that feels so endless sometimes. But I got there and therefore so can you. It would be so nice if they could know beforehand which was more likely to work for you, wouldn’t it?
And yes telephone consults when you need a physical exam truthfully isn’t good enough. Finally here in the UK they are offering face to face ones when deemed really necessary. But most are still over the phone. Best of luck.
All this time I’ve assumed that the Sulfasalazine was useless. I was pretty sore whe I went to bed and now having gotten up partly from pain and then to the washroom, I couldn’t make it without a cane for support. Right knee and foot were/are so bad!! We did go for a walk earlier and I was on my feet for a few hours in the afternoon but I have never needed a cane before! I’ve been off the Sulfasalazine for about 8 days. Does it leave ones system that fast that it could be the problem? I was on a half dose for months already. Yeesh!I feel like I have taken two steps (limps) back. If I take 200 mg of Celebrex I’ll have pain but an almost normal gate. Rheumy doesn’t want me on Celebrex.
I haven’t personally doubled Humira, except that I took a loading dose at the start, though I gather as poo says the once weekly is quite common in the US, we’ve had quite a few members talk about it (I can’t clearly remember who - brain fog - maybe @tamac?)
I take a double dose of Stelara though, and have been for about 6 months. It really seems to be a risk assessment process - obviously there is a concern that more biologic might be higher risk for infection etc, but in my case it’s now for Crohns we can’t get under control - so although I don’t think it’s the done thing for arthritis, they will do it for Crohns.
In your case, because you have uveitis, you might find that you fall into a slightly different category than the standard arthritis one, and since Humira has the best track record on that, your doc might be pretty reluctant to move you off it, hence the different tactic of higher dosing. That would make sense to me but I guess you’d have to ask your doc to find out.
I’ve had no dramas so far with the double dose of Stelara (except that it worked for 3-4 months and has now failed my gut again), it was great for my arthritis.
Oops! @Jen75, I don’t have uveitis, not so far anyway!
Oops, @Amos why did I think that… must be the brain fog 
Sorry, but I guess it’s good you don’t!
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Yes, I take Humira EW (every week). I don’t think you can do this if you are taking MTX or other dosing of NSAIDS. That is what doc told me since I can only take NSAID (Advil, Ibu, etc…) on a limited basis because they cause me arrhythmia. The studies my doc referred to only allowed people not taking other additional meds like MTX.
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I guess there are many approaches as I have been told to take 20 mg MTX with the weekly Humira
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I’m taking MTX with my double dose of Stelara. I guess they each have their protocols.
Remember Cosentyx loading doses were once a week for a month or so, then reduced to monthly but at the time was also on cortisone as well as methotrexate 10m weekly. Guess disease has to be abated as much as poss and later medicines can be reduced in dosage, perhaps? After a couple of years asked to be taken off cortisone as my weight had spiralled, and felt no more inflammation after stopping
Has you doctor considered that it might be the mxt that’s useless instead? You do need to report via email how the lack of sulfasalazine has made you feel quickly. Or indeed it could be because you’ve doubled up on the humira too. But truly you must report how badly your doing, please. As otherwise he can’t help you. And you shouldn’t just be putting up with feeling this rough without the ability to take NSAIDS too.
Because sulfaslazine is via tablets and at such a huge an amount per day, it does, if memory serves me right, clear your system pretty fast. Mxt though tends to be slower. All the new JAK inhibitor biologics are given by daily tablets. One of the advantages of them is how fast they clear your system if required. Whereas Cosentyx has a half life of 72 days or something. Humira is a little less than that but I can’t remember precisely.
Thanks all. It’s only been 2 days since I began my increased weekly Humira so I thought I should give the increase a chance to work. But I will be sending an update to the rheumy today…thanks @Poo_therapy for the “push” to do so. I’m also seeing some faint bruising on one foot and I don’t bruise easily. It’s a patch of reddish purple on my big toe large joint on the top and down the side. Seems to have shown up with the increased pain. It feels like all of my inflammation is internal…my joints show very little inflammation on the outside while inside is kicking away. I really don’t have a clue as to the harmony of how the meds works. Bar tenders can get pretty good at mixing things so I trust that an experienced rheumatologist should be able to do so. Mind you, we are dealing with chemists and doctors now who don’t seem to know how much vaccine is in a bottle, how much of it to give and how much is left over! I digress to whining. I wonder if PsA pain can affect ones mood just a bit?
Sadly, it most certainly can. Cyber hugs.
But the mood effects are always positive, right? 
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Everything is relative!
I used humira shots on a 7- 10 day dose after about six months on biweekly dosing. This gave me 2+ yrs of a working bio as embrel did nothing. I did not start an additional dmard until the last 3-4 months when things were clearly going downhill again. I am MTX intolerant and allergic to sulfa but did have some success with arava. I had no additional side effects and would totally recommend it. I could tell humira was working from the get go but just not enough. If you have seen any benefit on it it is worth the try before switching.
I was on MTX since 2011 until Dec '19.
I’d been advised by my liver specialist that it was time for the MTX to be discontinued in favour of another drug.
The Rheumatologist thought we should try discontinuing MTX and just see how I got on without it and monitor the situation. I can’t say it was fun to be honest, I felt much better without the nausea but my P flared horribly, followed by my fingers and enthesitis in my shoulders.
Because I’m in the UK and large joints aren’t involved and my spine showed no further deterioration, I can’t receive funding for a biologic, but they did apply for funding for Apremilast (Otezla) due to the peripheral involvement and enthesitis.
I started Apremilast in June last year. My nail P, which was horrendous after stopping MTX, cleared within 6 weeks, my fingers calmed down so I usually only have 1 sore DIP joint at a time, but my shoulders are still painful. I have had UVB treatment for the P so that’s now mostly cleared.
The main complication for me is that I also have fibromyalgia which has always flared when my PsA flares. Its not always easy to say which pain is from which condition, although I’m pretty sure my shoulder pain is now fibromyalgia pain as it’s more in the top of my arm rather than the attachment, not that the physio agrees with me.
So coming off MTX was necessary for my health, and I feel generally less ill, the 6 months “cold turkey” wasn’t ideal as my fingers are getting more deformed but could be so much worse.
The blood test I had recently show my liver is improving, so although I have other conditions which caused my liver issues coming off MTX was helpful.
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