I have been experiencing an extended flare. I can hobble around, and do, but it is like trudging through snow or chin high water. Very exhausting. I don't have to tell you all !
Saw my rheumatologist today for my monthly visit ( how often do you all go to the doc when on MTX?).
He is upping my MTX to 15mg per week from 10. I am would love to hear from others what their experiences have been when they have changed their dose. Did side effects get worse ? Does the "dirty penny" taste get stronger? I am apprehensive.
He also wants to take me down to 5 mg of prednisone from 7.5....I am apprehensive about that too. Oh dear, I am whining again.
Mimi, you are never whining, ok? You give so much support and uplifting here, a question does not equal a whine. My mtx dose was increased every winter and decreased every summer. I never noticed any change in taste, hair loss, g.i. upset or anything else. When my dose got decreased, I might have a little breakthrough psoriasis inside my ear, but that was it. Now that I have PsA, my dr. told me I'd stay on the 8 tabs per week. hope this helps.
I’ve not noticed much difference with increased doses either, maybe a little more tiredness post dose for a couple of weeks but that’s about all, went from 7.5mg to 10mg then 12mg, 15mg now on 17.5mg ( in about a year) and due to see rheumatologist in 2 1eeks for a review
As michelle says questions are not moans
I am with you all the way. I have been taking MTX 10mg since August and Prednisolone since July, starting at 20mg but now tapered to 7.5. I remember when I dropped below 10 It was awful the pain came back with vengeance and I could not walk. I used strong anti-flams and pain killers to get me through and in 2 weeks it settled down to a manageable level. Did you find this when you tapered dose?
The last week the pain and stiffness have been creeping back in it is like my body is getting use to the MTX as for a few weeks my fatigue levels were much better and pain in my small joints less. I know we cannot stay on steroids forever but I am a little scared what will happen when we stop them.I have PA in my SI joint which causes me a lot of pain and mobility problems. My Rheumy has told me MTX wont work on SI joint as it does not move and the only thing that has kept me sane is the steroids.
I understand it takes time to get dose and treatment right but then they do WOW we will be like a two yr old...lol... hang on in there and keep the faith.
I have found the sickness from MTX has been getting worse each week so I tried travel bands or maybe you call them sea bands on my wrists and they really are working for me. I put them on the day I take MTX and leave for 48hrs and no sickness feelings.
I am on 22.5 mg a week, injected. I went up by increments and did not notice any increase in side effects except, as Louise says, a slight increase in tiredness as my body adjusted. I have only been on Prednisone tapers.I have to decrease very slowly as I flare terribly as I taper. I also have a problem with anxiety as I taper, maybe due to flare? My Rheumatologist does not like to use prendisone much except as tapers so I am only on it every few years during really bad flares. I see her every 4 months. I just finished a bad flare that lasted 6-8 weeks. I know what you are going through I am sending you jugs and prayers.
I don't feel you are a whiner Mimi. If anything I think you should whine more often! After all you help a lot of people on here and I would bet in "real life" too! Anyone with PsA is entitled now and then to a big whine!
Hi MimiB, feel free to whine all you want. All of us here now how it is. I was on MTX but it did not help me, my rheumy put me on embrel after 3 months & no improvement. Which embrel did not help me either. So currently I am on remacaide. But when I was on MTX I still only saw him every 3 months unless I had any problems or questions. If you are not happy with the results of the MTX tell your rheumy so & tell him you would like to try something else. Be more pro active in your treatments.It will help you feel more in control. HUGS & prayers coming your way.
The loss of 2.5 mg of predi shouldn't have much effect EXCEPT allowing you to stay on it longer. Much higher than 5 more frequently causes some serious side effects (long term) Around here they check blood sugar levels pretty frequently looking for a "trend" on long term predi use.
You didn't mention a NSAID? Again the norm of the triple knockout (here anyway) is NSAID, PREDI, and DMRD. I know some docs prefer NOT using the NSAID because of liver stuff, but that is easily reversed when noted. You might ask him about it or ask about adding an OTC NSAID to see if it helps....
It must be really frustrating to be sooooo close to being there and just not there yet.
Wow........ There are about a hundred NSAIDS (or so it seems) I wonder where the reaction is coming from???? I'd be curious what they say to something like Flector or one of the other transcutaneous NSAIDS.
Hi mimi, the mtx was lowered in the summer and increased in winter due to different amt of daylight, I believe. I could be wrong, but the seasons definately have an effect on psoriasis. That’s why the dosing changed. Normally I’d be going from my normal summer amount of 16 to 20 mg. Instead, the dr kept me on the winter dose of 20 mg due to the new Psa diagnosis.
Blue –
Your rheumy said MTX won’t work on the SI joint “because it doesn’t move”? That makes no sense to me. And if it’s true, that would be a real bummer because the SI is where most of my pain is, so I why should I continue taking MTX if it’s not going to help my SI?
Mimi, As always you get the best support from the our PSA family! I love this site and the wonderful people who are always ready to respond to our needs. I don’t also respond to the posts, but I felt strongly about what you originally wrote. Asking questions and reaching out is never a whine or complaining, human beings need to vent their concerns, that’s why all of us here write, to support one another.
I started MTX in July and started at 3 pills but it made me so sick, so was changed to 2 weekly and will now try 3 in November. I take 15mg of predisone but we are increasing it to 20 every other day to ease flare that started 4 weeks ago. Yesterday was my first Humera injection and I am praying that will be the answer to my suffering. Rhmy is adding Naproxen back into the mix, as I’ve been off it for 6 weeks and she thinks that might have caused the flare. My doctor is diligent about blood test every 6-8 weeks, and I am glad that she keeps tract of those findings. I see her every month but once things calm down and we find the right mixture of meds, I will go 3 months between visits. I am having problems sleeping in a bed and end up several nights in a recliner. Dr suggested purchasing a temperpedic bed and even wrote me a RX for it, in case my insurance will cover it. Has anyone had luck with having it covered? Success from that tyoe of bed? Mimi, I will pray for you and hope your new RX regimine will help. Keep us posted…
I never had problems with the Mtx when I dropped it, and I was injecting a high dose. Prednisone is another story. You need to drop slowly or the headaches are tremendous. I dropped ½ a mg at a time for a few days before dropping another ½ mg and still had a rough time. Rheumy at the time said that if you don't drop slowly "your brain fries".
I feel for you. I am having problems with my meds with side affects and it feels like my meds are not working anymore. I have juse come off Prendisone for a flare and even though there is improvement I am not back to where I was and still in a lot of pain.
I started off with monthly visits to my Rhuemy then two monthly and then three monthly. I needed to realise that my Rhuemy is only a part of my treatment because if I had to rely on the meds alone I would never cope. Have you tried a TENS unit? Gentle massage? Gentle exercise or Tai Chi.
The more you stress over it the worse it can make you. Relax and rest and do what you can to take your mind off your pain. You might like to find out about some pain management that includes relaxation techniques.
When you are in a flare you have to accept the fact that all you can do is take care you.
I get through my day doing small things that are easy for me to achieve. Even though my hands have PsA I can still use them and I think about others who are wheelchair bound without much movement or with a brain that doesn't function properly like mine and I am grateful for what I can do.
I have made a long list of things to do when I am out of sorts. I took up a new hobby and I paint abstract and I make lots of crafty things for gifts for my family and friends. I knit things for charity to go to the homeless and sick children. This gives me a sense of achievement that I have done something worthwhile.
From 7.5mg down to 5 in one day - if you’ve been on it for a few months, that is really going to hurt! From 8mg I went 1mg a week (still pretty darn uncomfortable), once I hit 5mg, I was only doing 0.5 mg a week, and even that is uncomfortable.
Evenings and mornings are always the worst - except right now - because of jet lag my early morning is actually afternoon - how confused is my body!!! he he
When did you last have a blood test? In uk we have bloods done every 2 weeks for the first 8 weeks then if all going well it goes to every month. I have to record results in a booklet given to me by Rheumy nurse and they double check results when you visit clinic, as well as GP checking results as they are taken. They will take you off MTX if you dont get your bloods done they are that important.
If you have not had any bloods done please please get them done to make sure all is well.
When I last spoke to Rheumy thats what he told my about SI joint he also said that it was on its way to fusing and if it did fully fuse it would help the pain levels!
I am worried about your bloods tho, if they have not been taken lately please get then checked.
Great. For some reason thought you had not had any done. Phew!
GP gave me two more tablets to take yesterday as I have been on Prednisolone since July. They are for osteoporosis one is calcium and vit D the other is Alendronic Acid, I am a bit unsure about taking the A.Acid seems to have a lot of side effects. Do you take anything for osteoporosis?
Sorry that you are suffering. I take 10mg of Mtx and only take prednisone for rescue times when I can't walk. My rheumy said we don't want to go beyond 10mg and the next step would be a biologic. I am supposed to go every 2months or so. I get diareaha from the mtx for a day or so from the increase in dosage (7.5 to 10mg) It's been a few months and I am not sure about improvement. I feel like the mtx is not slowing the progression of the PsA because my shoulders are now involved and I have never had it there before. I have been up all night with my back beca;use the pain pills did not work like they usually do so I am just not sure about upping to biologics. I am scared of that and I don''t think I need to go there yet. You are not whining you are sharing!!
This is me almost exactly except I take it on Fridays because of working during the week! Sometimes I dread taking it because I am afraid of what awaits me. I am noticing that not every weekend is the same. One weekend I actually wasn't wiped out! But the next weekend I was exhausted again and felt like I had the flu. Is this how you feel?
