Hi guys,
I’ve been holding off the introduction until I found out either way whether I have PsA.
So, after the round of bloodwork, that was all negative, my rheumatologist still thought she has enough evidence to actually make the diagnosis!
She started me on 10 mg/week of methotrexate and 1 mg daily of folic acid.
My story is probably very familiar to a lot of you. I had scalp psoriasis since childhood, then it was behind my ears, then on top of my eyes, in my ears and earlobes. Then a spot on my knee, nail ridges, slight pitting and last week a spot on my elbow. So, really very mild psoriasis in comparison.
I started complaining about my knees mid twenties, but was told it was the extra weight. When my wrists and fingers got involved, it was carpal tunnel. Elbows were cubital tunnel, tennis elbow AND tendonitis.
Ten years ago I started suffering from stiffness all over, multiple tender to the touch areas, extreme lower back pains, after jumping through hoops and changing so many family doctors, after being told everything from ‘it’s chronic pain, deal with it!’ to ’ it’s all in your head!’, I was finally referred to a rheumatologist, who diagnosed me with fibromyalgia after doing the trigger points test, I had 16 out of 18 possible ones. My joints were not a big issue back then.
My fibro was under control for 2 years, when Cymbalta stopped working and I couldn’t find a happy place since, didn’t help that I got pregnant and kind of not gone to the rheumatologist again.
Over the next 8 years, I developed Raynaud’s phenomenon, extreme dry mouth with swollen sore tongue that felt like it was burned by hot liquid ALL the time, difficulty swallowing, acid reflux, irritable bowel, recurring sinus infections that would linger for months with voice loss. I have to take allergy medicine and steroidal nasal spray year round to keep it under control.
A year ago, my elbows, knees, wrists and fingers got so bad that I asked for a referral to an orthopedist.
Took kenalog injections, no relief. Took Euflexxa shots for my knees, nothing. Got carpal tunnel and cubital tunnel releases, no relief whatsoever, as a matter of fact I think the numbness may have been masking the pain a little.
Anyways, the pain kept getting worse, then my hips got involved and that’s when I started thinking, something else is going on besides fibromyalgia.
My shoulders joined the parade and finally I decided to go see a rheumatologist again.
And here we are!
She actually mentioned that I may have secondary Sjogren’s, but didn’t write it in my chart, because the treatment is the same anyways, according to her.
I’m just glad I’m finally on a course of treatment and looking forward to the pain getting better and hopefully subsiding!
I love this community and I’m proud to say that as of yesterday, I have read all the posts in the newbie guide and the new member check in!! 
There is a wealth of information here. I feel so empowered by being informed!
I have one question, though, after taking the first dose of methotrexate, how long does it usually take for side effects to start up, if any?
I like being prepared.
Thank you for everything!
Hi there Nermada, welcome!!! I’m new here myself 
Sorry to hear you have PsA, but now you have a diagnosis treatment can be started in earnest (which must be a good thing, right?)
As for when side effects start with methotrexate, if you are going to have them they could pop up anytime… like most things everyone seems to have a different experience.
If they do start though here’s a couple of ideas that might help reduce them:
- Try taking your Mtx in the evening (I do this so tend to sleep through any mild nausea)
- Drink plenty of water the day you take your Mtx
- Ask your doc about increasing your folic acid
Those things seem to help a lot of people with side effects.
Oh, by the way, normal blood work seems to be quite common with PsA, as far as I can tell.
Best of luck with your journey, and please do keep us posted
Feel free to join me in the sjogren’s syndrome support group at http://www.sjogrenssyndromesupport.org
Nermada, we’re glad that you found us and even happier that you like our clubhouse! Congratulations on making your way through our Newbies’ Guide. We’re planning some additions to it: do you have any suggestions for anything you’d like to see thee?
Your journey to get here, sadly, is not unusual at all: I came across a statistic on another site which said that, on average, PsA patients experience a delay of over six years between symptom onset and diagnosis. You have surpassed that, but I have a feeling that you’re about to make up for lost time!
When do methotrexate symptoms typically start? Very often, never. A lot of people don’t notice its presence in their body at all. Others have a reaction as soon as the pills go down the hatch. By the same token, some people we know have become violently ill almost immediately, while others feel a bit queasy and after sleeping it off, feel just fine. I think your best strategy is to think positively, take it in the evening before a day when you can lie low if necessary, and hope for the best. And if nothing happens, carry on.
You’re right about being well-informed: it is very empowering to know some strategies for getting the best rheumatology care that you can, and to have a basic understanding of what this disease is all about. Although this is one devilish opponent that we are up against, knowledge and determination, we can often outsmart it.
Glad you joined us, Nermada! It sounds like you are too
Jean, thank you for the tips! I did take it with dinner, but I think I’m just going to take it at bedtime next week, because it made me real queasy the rest of the night.
I’m also trying to drink a lot of water today, which is hard since I really don’t like water at all! 
And yeah, the negative blood tests make it so hard to be believed. Thank God for good rheumatologists!!
Stoney, I’m definitely going to do that, thank you.
Seenie, I AM glad I joined this community, it’s awesome!!!
I have no suggestions at this time for the newbie section, but if I think of anything else, I will let you know.
As far as thinking positively, I’m blessed with Asperger’s (and so are 2 of my 3 boys), which really makes me very matter of fact. I have a condition, therefore I need treatment. That’s all it really is for me. I only ask questions to be informed and know what to expect, because the not knowing is what makes me anxious.
So far so good on the methotrexate, queasiness and a bit of stomach irritation, but nothing I can’t handle.
Thank you for everything, especially answering my questions.
Fifty-one percent of us have inflammatory markers in the normal range. Mine was normal even while the inflammation in my hip was so extreme that I lost 2L of blood in surgery when they replaced it. It’s downright weird, and it confuses a lot of doctors. They take one look at the esr and the crp, decide there’s nothing wrong, so it must be all your head. LOL
There just has to be a better way for that inflammation to be measured, hopefully somebody smart comes up with it soon!!
Our heads are probably the size of the Cool aid man’s, for the amount of stuff that’s just “all in there”!!!
Hi Nermada,
When first reading your story, I was amazed at the overlap in our progression of PsA and how much was downplayed to us by other Drs. I am so glad you found this site, and I’m thankful you’re getting treatment finally. I, too, have negative blood markers. My rheumy suspected PsA for 3-4 yrs (because nothing obvious was showing up), but she didn’t formally diagnose me until she saw obvious wrist swelling one day at a 6-month checkup. She had said for years that one day something obvious would pop up, and sure enough, a joint other than my bad knee FINALLY swelled. I know that sounds silly as something to be grateful for, but I was simply glad to be validated for a change. Your situation is much more severe than mine, but I hope the meds kick in quickly and provide relief and a stop to the joint damage.
–Lisa
Welcome! I am a fairly new at being diagnosed too. This site has been wonderful at making you not feel alone in all of this. I am still somewhat of a lurker and read most of the posts, although I don’t respond too often. I am new to Methotrexate too. So far so good. I wish you the best with yours!
Queasy is a good way to describe what I felt too… but this does seem to have settled over time… if you do have any side effects (hopefully you won’t) do discuss them with your doc, you might find you can play around with the dose a little until things settle, that will depend on what the side effects are and how you cope with them I guess.
I do hope you find you get good relief and as quickly as possible… it can happen 
Hi Nermada
I’m also new to this wonderful group.
Your situation is much like mine with an initial “it’s all in your head”, it’s “just stress” and then “it’s fibromyalgia” path on the road to diagnosis.
I take methotrexate (17.5mg/week) and, other than occasional queasiness, I’ve had no problems. I always take mine on a Thursday evening, purely because Friday is my day off work and I was expecting all sorts of horrific side effects.
Today I’m off out for a bit of retail therapy, so no negative effects.
I say retail therapy, but I’m actually shopping for another pair of Velcro fastening old lady shoes 
I miss my heels so much 
Lisa, thank you very much for your reply. I totally understand the validation thing! It feels so good after years of complaints falling on deaf ears.
Thank you, Steen. Here’s to the methotrexate working for us, so we don’t get on the meds merry-go-round just yet! 
Thank you, Jean!! You are very kind. I hope we all can find lasting relief.
Joy66, the only times I was able to wear high heels were when I was a teenager!!! I mostly live in clogs and crocs. 
Aside from the queasiness, I just felt a little spacey for a day or two afterwards but so far so good.
I truly feel your pain with all the “words of wisdom” from our physicians. It’s funny how we have to do a lot of the legwork ourselves and can end up being better experts on our conditions.
I have to say however, that I do agree with my fibromyalgia diagnosis and so does my new rheumatologist. What I cannot figure out is, if the fibro was secondary to the undiagnosed PsA or just a stroke of good luck! Doesn’t make a difference now anyway, just something else to add to my resume.