New to this place!

General
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Hi. Just joined this forum yesterday after being diagnosed with PsA last week (following four years of symptoms getting closer and closer together!). Thank you for the welcome.

It's great to find a place with information and support. Having intermittent pain over the last few years has been tough. Being diagnosed feels like a relief but also has hit me quite hard as my ongoing denial of what is going on in my body is at an end. I have an immune system disorder and my body will fight itself - and it will be painful - probably on and off forever. Fact - unless I go on medication with all the associated fun and games that come with meds. Just got to get used to the new reality I suppose.

I took my first 7.5g of Methotrexate on Friday and am continuing to take NSAIDs daily. I presume the Methotrexate dose will be increased over time once the bloods prove that no damage to the liver is being done? What is the usual does for PsA?

This week I feel quite good. Kenalog shots to my right elbow and right knee last week mean that I am virtually pain-free. My CRP was 70 last week - that reading scared me. Never been higher than 20 before. 70 seems very, very high. It feels odd to be on a long term medication now when I feel pain-free today. I have to get used to the new mind-set of treating the underlying condition rather than treating symptoms.

Here's a question - do others 'feel' when they have systemic inflammation even if there is no physical pain in joints or soft tissue? Or is it just me - or my imagination? I am convinced I can just 'feel it' in my body when my CRP is up. I just feel different. Also, I have been having night sweats on and off for months - my Rheumatologist put this down to having systemic inflammation. Probably explains a general lack of energy and motivation in recent months.

Since taking the Methotrexate, my night sweats have intensified. I have changed two t-shirts a night for the four nights since the dose. Gross. Anyone else had this?

In terms of side effects from my first MTX dose, felt a bit odd, a bit tired and two fleeting moments of nausea. Nothing too debilitating Horrible taste in my mouth and a loss of appetite. My sense of taste has changed and I am obsessed with vinegar, chillis and pickles. Odd. I also felt quite tearful and emotional - not unhappy, just like the filters that usually stop me letting this stuff out had been taken away. It may have been a release from all the stress of the pain but it may be MTX-related. I guess if it happens every week, it will become clear to me.

Another question - whilst everyone has different side-effects, do people generally get the same side effects and level of these side-effects each week following the MTX dose or does the body get used to the weekly pills? In other words, having got off quite lightly on week 1, can I assume (hope!) that I have a similar or lessening experience ahead of me. I hope so. I can live with what I felt after the first dose. Will side effects increase when the dose is increased. Did i just feel OK-ish because it was a starting dose?

I suppose the reason for this brain dump is to see if any of you can help me feel normal (!) in what I am experiencing and hopefully, if someone Googles "pickles and methotrexate", they will find that they are not alone.

Paul

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Welcome, I just joined a few days ago as well. I've already learned from what others have gone through. I am on my 4th dose of Methotrexate (6 - 2.5mg tablets), and also take Meloxicam and folic acid daily. I haven't had too bad of side effects. I take it on Sunday evening and just feel "odd" on Monday and Tuesday so far. Like you are experiencing, my appetite and energy level are low. My pain and swelling (feet, ankles and legs) has improved alot. I haven't had nausea or the weird taste some complain about. I used to have night sweats before I was diagnosed but since I've been on the meds, I have been cold during the day and the night sweats have subsided.

Before I was diagnosed, I had lived with a lot of pain and it was starting to effect my job, social life and general outlook on life. Now that the meds are kicking in and the pain has subsided, I'm starting to get motivated and am not depressed as much. I guess I'm taking it one day at a time and the meds still scare me a little but if the pain is minimized, I think I'm fairly optimistic now. At least I know WHY I was in so much pain. Hopefully, you will not experience increased side effects. I go in for a check up and blood work in a week or so and they might up my dosage to 7 pills of MTX. I'll let you know if anything changes. Good luck.

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Hi PsA999!

Welcome and good to hear you have been properly diagnosed recently. You will find useful information here from many people and many moments of, "Me, too!".

I have been taking injectable methotrexate for almost 7 years and when I first started the side effects were not good, to put it mildly. I suffered from nausea, loss of appetite, hair loss, and a few other ones that weren't fun either. I am happy to report, it will get better with time. I feel some nausea on the day I inject and usually the following and then all is good. Fatigue usually accompanies it but I believe it has something to do with the meds "doing their job" in there and that passes, too. It is important to note that I am also on Remicade every 6 weeks. I have been on just about everything before finding a miracle with Remicade. I hope your course of treatment will be the "one" for some time to come.

I feel it in my body when my numbers are up and I tend to know what the weather will be well before the weatherman. Ha! I find my body temperture is out of whack most days. I thought this might be due to medications but I have read recently that people with psoriasis, their bodies are unable to maintain proper body temps. So, maybe both effect temperature. My medications tend to make me feel fatigued during flares and usually after receiving Remicade, I find I am "worn out" for a day or two and then back on track.

My advice, though not asked for by you, sorry...

I have learned through this: my life before diagnosis is over and I had to mourn the loss. There is a life after diagnosis, a life unexpected and changes almost daily. I have learned to be grateful for what my life is today and what tomorrow can be to help me enjoy today. Life is not over and we are not alone; its just a different life and we are surrounded by those who love us.

It was a hard lesson to learn but after a 1 1/2 years of not being able to walk or write my name (or anything else), I am truly grateful for today. Grateful for this support group because I no longer feel alone.

My wish for you: you find support, friendship, all the information to help you feel better about the future, and a treatment plan that will work right away (no playing around to find one)! Good luck and keep us posted on your progress!

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Hi PsA999 -

It is a bit of shocker getting the diagnosis, isn't it? I still have days where I think my doc must be wrong and that I have something curable. Side effects of MTX - everyone experiences it differently but in general, if you do experience any, your body will adjust and most side effects will go away. If your doc hasn't already given you folic acid, you should ask about that. It helps counteract some of the side effects, particularly hair loss. Drink lots of water the day before and the day of your MTX dose - it seems to help with side effects, particularly the tummy/digestive issues and headaches.

My experience with MTX has been just fine - each time I've had to bump up the dose (I've just gone to 17.5 mg/week by tablet), I'll get a few side effects - stomach trouble/headache/tired, but within a few weeks my body seems to adjust. After 6 months of MTX alone, my doc added Enbrel and I've been on that for 7 months. With the latest change in MTX+Enbrel, I'm having less pain (still there but never as bad and *never* for as long).

I'm not sure that I've *felt* any systemic inflammation - or if I did, I attributed it to seasonal allergies, a cold, or being fed up with work!

And thanks to Anne Marie for mentioning body temperature being out of whack as a symptom of PsA. I have ALWAYS run hot and over the last year or two, having the heat set at 65' just isn't warm enough, and air conditioning below 75' is just too cold. I'm having to rethink my entire wardrobe now to accommodate actually getting cold. What a strange phenomenon!

I hope you find lots of useful information here. Welcome!

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Hello Paul-

I am new to this site too, and fairly new to putting a "name" to my illness. I knew I had psorasis, as do my dad and my brother. I had to figure out this PsA piece of it myself, as my family doctor was NO HELP. (When I told him what I figured out that I must have PsA, he just shook his head in agreement. I had to do the research myself!) I am so happy to hear someone say that your body temperatures are off! I am typically "freezing" when others are normal temp, but have also noticed lately, when I'm stressed out during the day, I find myself getting hot out of the blue, it just "flares" up occassionally. When I read your post, the lightbulb went on for me!

Thanks for all the great information. I hope to learn more here.

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Thank you all for your responses and kind words. It's so reassuring to know that much of what I'm experiencing is 'normal' - well normal for us anyway! The hot flushes and sweats perhaps are something to accept... like all of it really. I started to feel a lot more normal on Wednesday, even more so yesterday and feel 100% today - just in time to take my Methotrexate later today! The pickle addiction wore off through the week but may kick in again tomorrow. At it's worst I was eating pickled ginger as soon as I got up as I just needed that sharp taste. Very odd.

Forgot to mention that I am taking Folic Acid too.

Thank you all again and I wish you all the best for living with either the pain and discomfort or the side effects and endless interactions with health professionals of some kind!

Anne Marie - you sum it up perfectly. Life just becomes different and acceptance is the key.

Paul

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Hi Paul!

Your week of methotrexate is exactly as mine...start feeling 100% --time to have it again! DARN!!! Your dill pickle comments made me laugh because as I started thinking about my "cravings", it is always something sour like greek olives, lime potato chips, and so forth. Don't figure!

Anyway, I'm glad to hear you're feeling better and know that once you know what to expect, the easier it will be! Have a great weekend! Anne

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Hi Paul,

I'm fairly new to PsA also. I've had psoriasis for 4 years and maybe after a year my right knee got swollen, no pain, just swelled.... Eventually though the pressure got to be enough that it hurt. At the time I went and got a cortizone shot, and laid off the knee, it slowly got better. This past summer it swelled again. This time I didn't lay off the knee, I wanted to get this figured out. It turns out it was PsA, as well as maybe some other problems I've had, such as a finger swelling up badly, and my jaw hurting. 9 weeks ago I got a cortizone shot again but I started on 6 x 2.5mg MTX a week. The MTX worked nicely, but 4 weeks later I started on Enbrel which I think works better and has less side effects. Last week when I took the MTX I couldn't sleep, so I called my Doc and we agreed for me to stop the MTX and just stick with the Enbrel.

I studied the side effects of Enbrel, there's a lot of "called in" side effects, but most of the studies show very few problems. Perhaps there is higher sun sensitivity, I'm not sure. You will read on here that sometimes Enbrel (and other biologics) lose their effect. Researchers seem to think that this is because your body builds up anti-bodies, this can happen especially if you stop taking the medicine for awhile.

The good thing is, there seem to be 2-3 other biologics that you can switch to. Also there are new ones coming out fairly rapidly now.

Go to Psoriasis.org for a lot of solid information. It's scary to be diagnosed with something you will have to take medicine for your whole life, but psoriasis is a well studied disease, and a lot of the treatments work very well for a lot of people. Good luck to you!

--Andrew

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Andrew - thanks for the info. Interesting you mention that you couldn't sleep on MTX. I took my second dose on Friday and certainly found that getting to sleep was difficult for two nights. All had settled by Sunday night though. I think Enbrel or other biologic agents are waiting in the wings should the MTX not work fully. I'm happy to give this a try and see how things progress.

For all new Methotrexate users - my second weekly 7.5mg dose had less side effects than week one. This is good news as I was concerned about feeling rough EVERY week. I did feel a bit flat and a bit low with the occasional short feeling of nausea and fairly regular acidity in my stomach. I certainly am still averse to certain foods but the side effects are at a fairly low level. I was not as emotional this week but I still want to eat pickles with everything!

Good luck to you all. I'll let you know if anything of note happens. I have my next Rheumatologist appointment at the end of the month so I expect the dose will be increased from this starting dose.

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Week 3 - took Methotrexate earlier (so I feel ill working today and recover sooner!). Splitting headache, feel odd. Fed up. Also got neck, shoulder and back ache since yesterday. Happy days.

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Question for some of you… Is one I the symptoms of PsA that you just feel generally rubbish? I dont have any inflamed joints or soft tissue flaring up at the moment but I feel achy all over. Not pain as such, just really low level aches. My knee (that was really bad recently and needed fluid draining and a steroid shot) just sort of hurts very slightly. My back is not bad but feels a bit stiff and achy. Same with my neck and shoulder. Is this normal? I guess I have had a lot of this over the years but now I have been diagnosed, I’m starting to realise it may be the PsA. AlsO, had a rough MTX day yesterday. Thought about giving up. Feel a bit brighter today.

PsA999 said:

Week 3 - took Methotrexate earlier (so I feel ill working today and recover sooner!). Splitting headache, feel odd. Fed up. Also got neck, shoulder and back ache since yesterday. Happy days.

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Hi PsA999,

One of the drug sheets that I read for MTX listed "general body discomfort" as a side effect. I laughed when I read it because I hadn't been able to adequately describe what I'd been feeling but "general body discomfort" hit the nail on the head! That general ucky feeling went away once my body got used to the MTX. I know that that stuff can make you feel pretty bad, but hopefully with time the side effects will go away. I've been on MTX for just over a year and 4 weeks ago bumped up the dose to 17.5 mgs/week. The first two weeks after bumping up the dosage left me feeling ucky and "GBD" but now I don't even notice it (other than gagging on all the pills!). If your doc hasn't prescribed folic acid, talk to him/her about it. It can help alleviate some of the side effects.

Wishing you good luck with the MTX and many pain free days!

Andrea

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What an awful few days. Crying all the time with the pain. Just feel rotten. Morning stiffness and pain is unbearable. Only diagnosed three weeks ago but this is clearly the biggest and most severe flare ever… High CRP levels told me that. Anyway, wonderful rheumatologist called me back today and ha prescribed Prednisolone for a month to get things under control whilst the Methotrexate starts to work slowly. Told me that target dose for MTX is 15mg - double what I am on currently. Jeez. This board has been a great help. Somewhere to share and listen without burdening loved ones more than absolutely necessary. Taking dose 4 of MTX before bed tonight… deep joy!

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I am so sorry you are so miserable. ("Been there, done that" as they say!) Wish we could give you a big group hug! < >

Will keep you in my prayers today.

Lainee B.

PsA999 said:

What an awful few days. Crying all the time with the pain. Just feel rotten. Morning stiffness and pain is unbearable. Only diagnosed three weeks ago but this is clearly the biggest and most severe flare ever.. High CRP levels told me that. Anyway, wonderful rheumatologist called me back today and ha prescribed Prednisolone for a month to get things under control whilst the Methotrexate starts to work slowly. Told me that target dose for MTX is 15mg - double what I am on currently. Jeez. This board has been a great help. Somewhere to share and listen without burdening loved ones more than absolutely necessary. Taking dose 4 of MTX before bed tonight.... deep joy!
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This PsA journey is tough isnt it?! Had to go on Prednisolone last week as morning stiffness was unbearable. Felt a lot better within a few days and inflammatory markers are bmback to normal. This whole diagnosis has hit me hard… Even though I knew something was going on, knowing that I will probably always be living with medication, Rheumatologists, blood tests, and not knowing when the next episode of pain is coming from us difficult.
It has hit me really hard and I have been so emotional. Very out of character. My wife says she wants ‘me’ back. I feel a little like I don’t know who me is now. It might be the Pred making me feel odd. MTX dose increases to 10mg today. Plan is to get up to 15mg.

Hope everyone is well. I am keeping this post going in the hope that someone who feels as utterly desperate as I felt when I first posted will get some comfort. It has been a particularly tough month but today my pain is better and I am am now working with the experts to manage this condition. That alone is something to be thankful for.

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Having read all of your posts I have had my eyes opened to some things as well. I too have found that my tastes have changed...not near as much sweet but want savory/salty tastes...I even eat green olives now and never before. Also; I am always on the hot side of the temp gauge...more so than anyone else around me. When I have to take the prednisone for severe flare I just run with perspiration. My thick natural wavy hair is now thinner; straighter and very fine...I do like the comment about our lives changing as mine is so different than before PsA...no more speed walking; gardening; cleaning house top to bottom with out stopping...

We are definately well known at our labs; pharmacies; doc offices and yes people can call me a pill popper if they want to but; without those meds I can't move...so be it; right.

Hope your medication routine settles in soon...I am fortunate that my side effects are few, but am always mindful that could change at any time.

As for being emotional...there are times that we just can't help it...and I know you wife wants you back but so do you. That is the one thing my husband had to learn...he isn't the only one that wishes my "old"self would return.

Hanging in there too. Alma

Keep smiling...it is contagious