Just diagnosed

Hello. I was just diagnosed with PsA at the age of 65. I had symptoms for years but ignored them. I am a retired RN and I had never heard of PsA! I broke out in plaque psoriasis on one elbow about 6 months ago and have had arthritis pain for years that my doctor told me was just plain old osteoarthritis. He apparently was wrong but because I didn’t have any other symptoms, he didn’t suspect that it was anything other than that. I just started on Methotrexate and I’m scared that I will feel sick and I’m not happy about being immunosuppressed. I would love to hear from other PsA folks that are taking MTX so I know what to expect. Thank you.

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Comments

View Comments (21)
  • BobbieClaire author
    6 months ago

    Hi Dillon,
    I’m so sorry to hear that you have suffered so much. I have read many great things about Otezla. I wish I could try it but it’s not on my health insurance’s formulary which means that I would have to pay for it myself. No can do! I wish you the best of luck with Otezla and I hope you get relief very soon!

  • DILLON
    6 months ago

    I too have been diagnosed and been treated for osteoarthritis for over 10 yrs. Started in both hips, effected my knees, lower back (levoscoliosis) feet. Have had psoriasis for just about the same time never has anyone asked if I have skin issue. Until recently I asked about it.

  • BobbieClaire author
    6 months ago

    Hi Dillon,
    Have you now been diagnosed with PSA? Is your Psoriasis ‘Plaque Psoriasis’? I too was diagnosed with Osteoarthritis until my skin broke out with Plaque Psoriasis. I had been misdiagnosed for over 20 years but because I didn’t have skin lesions until this year, no doctor suspected PsA. Best of luck to you my friend.

  • DILLON
    6 months ago

    Yes I’ve been diagnosed with PSA only a few months ago, I have inverse psoriasis since 02. I been told that it is possible to have more than one type of arthritis.Osteoarthritis for over 10 yrs. both hips, knees, lower back, feet, now PSA. I’m not sure how they are connected. No family history of anything. A lot started while in military. Tried everything PT, acupuncture, injections w/ no relief. Was on sulfasaisine(sp), now going on Otezla.

  • BobbieClaire author
    6 months ago

    Hi my lovely PsA friends,
    It’s been a while since I posted but I’ve been reading your comments to my original post. Things haven’t been going very well. I saw my Rheumy this week and he said that I have more joint swelling and damage than 4 months ago. He switched me from oral Methotrxate to injections and added Embrel. I have to inject myself with both meds every week. I haven’t picked up the new meds yet because I’m just plain scared of the nasty side effects. I already feel like crap from the oral MTX at a lower dose. I’m terrified that cold and flu season is coming and my immune system will be very suppressed. I will get my flu shot of course and I don’t like complaining but I’m sick of the fatigue, exhaustion and nausea. How’s everybody else doing?

  • Amyell
    8 months ago

    My rheumatologist has suggested mtx for me. I’m still up in the air about it. I would love to hear what others have experienced too!

  • BobbieClaire author
    8 months ago

    Hello to my new buddies!
    I read each and every one of your comments and I appreciate them all. Thank you all so much for sharing. I didn’t get nauseated this MTX cycle but my joint pain and swelling increased. I’m afraid my Rheumatologist will want to increase my MTX or put me on a Biologic. Sigh…….. Big, gentle hugs to you all.

  • mich54
    8 months ago

    Hi BobbieClaire. I am 64 and I just “self” diagnosed in the past year. I went for 30 years with inflammation and increasingly stiff joints with the same response from my doctor. Well, really no response, just about. He did send me to a rheumatologist but he was useless. I finally figured it out when I got psoriasis on my scalp a year ago and also remembered I had it as a little girl. I took methotrexate for 3 months, but it did nothing for me. Neither good or bad. I was worried about the nausea too. I have the same fear of throwing up! I will try to avoid it as much as I can. But I never had one moment of of nausea. I took folic acid every day. I started with 6 methotrexate pills and then he upped it to 10. But after 3 months, we stopped it and I went to Humira. After 3 months of that we stopped that too and now I am trying Consentyx. Funny, I had high hopes that once I had a diagnosis I would get on meds and be better. I am finding out that is not so. There are facebook pages on PsA and I hear many stories of how it is trial and error with these medications. I hope you find something and I hope I do too. LOL.

  • imschmarte
    8 months ago

    Hi Bobbie! So sorry you were diagnosed with PsA, and psoriasis. I am 62, and I was diagnosed when I was in my early 30’s. So I have been fighting this battle for about 30 years. I have also been on methotrexate for about 18 years. While I do get sick, cold or flu, more often than others, I feel that is a small price to pay for what methotrexate does. I was on Remicade for years, and it was fantastic! But at 10,000 dollars every 5 weeks, my insurance said no more. So all I have between my psoriasis and PsA going nuts, is methotrexate. It keeps the psoriasis under control, I still have it, but it is not as bad as it has been without the MTX. Same with the PsA. Doesn’t stop the symptoms, but it’s better than without the MTX. Good luck to you, it is definitely a learning curve, what works for one, usually doesn’t work for someone else. But I wish you the best, and hope they find a combination to work for you. Take care!!

  • SusanRebecca
    8 months ago

    I too am a retired nurse. I’ve heard about PsA but don’t have psoriasis. I have had a skin condition called granuloma annulare all over. Ugly red circles that is an autoimmune condition. I’ve been diagnosed with Fibromyalgia many years ago and was managing it until 2 years ago. I went back to the same rheumatologist that first diagnosed me because I thought I was suffering with an unending flare. She did tests and said I have PsA. I begin with MTX orally for a year, now switched to Subcutaneous inj. once weekly. No side effects. Also tried Stellara with no success and now go for an IV infusion of SimponiAria every 8 weeks. I have bad and good days but I keep telling myself it could be worse. Thankful that I’m not working and raising children….now that’s difficult. Hang in there:)

  • SusanRebecca
    8 months ago

    I too am a retired nurse. I’ve heard about PsA but don’t have psoriasis. I have had a skin condition called granuloma annulare all over. Ugly red circles that is an autoimmune condition. I’ve been diagnosed with Fibromyalgia many years ago and was managing it until 2 years ago. I went back to the same rheumatologist that first diagnosed me because I thought I was suffering with an unending flare. She did tests and said I have PsA. I begin with MTX orally for a year, now switched to Subcutaneous inj. once weekly. No side Also tried Stellara with no success and now go for an IV infusion of SimponiAria every 8 weeks. I have bad and good days but I keep telling myself it could be worse. Thankful that I’m not working and raising children….now that’s difficult. Hang in there:)

  • nesto
    8 months ago

    Hi, I am a 58 year old man! I was diagnosed with psa in 1996, I’ve been taking methotrexate since then. At first I had it injected weekly (25mg) then after about a year I was switched to tablets. My weekly dose now is 20mg.
    Firstly my psoriasis cleared completely, occasionally I have an itchy patch where I would have previously had broken scaly skin. Secondly I rarely have inflammation with in the joints anymore, (elbows, fingers, knees and toes) I do suffer badly with inflammation of the tendons, neck, shoulder, elbows, wrist, some fingers, and heel.
    I can’t remember ever feeling sick due to methotrexate.
    If you ever need antibiotics (penicillin) make sure your doctor knows about the methotrexate, the worst experience I ever had was when I was given the wrong antibiotic, it’s no exaggeration to say I thought I was going to die!
    On the whole methotrexate has kept my psa under some sort of control for over 20 years.
    Good luck, I wish you well.
    Neil.

  • BobbieClaire author
    8 months ago

    Hi Cathy <3
    I'm taking my weekly MTX today. I'll let you know how it goes with the nausea. Thank you for the friend request, I accepted of course, you are a sweetheart. How can I send you a friend request?
    My 38 year old daughter just started showing definite signs of PsA. I am so worried about her. She is going to try to see her doctor this week. I read that PsA and other AutoImmune diseases can run in families.
    Have you heard of this too?
    Take care

  • CathyD moderator
    8 months ago

    Hi @bobbieclaire 🙂 How are you feeling today with the nausea? I noticed in another comment you said you have a phobia of being sick – that is me too!!! I’m hoping that it’s manageable for you after this week’s dose.

    I’m so sorry to read that your daughter is showing signs of PsA 🙁 I’m glad she is going to see her doctor about it. Make sure she mentions your diagnosis too – it may help them figure out what’s going on. It is true that autoimmune diseases can run in families – one of our team actually wrote a little about this in this article, which I thought you may find interesting: https://psoriatic-arthritis.com/answers/autoimmune-conditions-collect/

    Thank you for accepting the friend request – we are now friends which makes me happy! For future reference, if you would like to add anyone else as a friend – click on the menu at the top left of the site > Community > Member Search and then you can type in a username and find the person you wish to add. I hope this is helpful.

    Big hugs to you and your daughter!!

  • imschmarte
    8 months ago

    Yes, it does run in families. My 2 siblings have it, and my sisters daughter has it too. We all have different combos of autoimmune. We all have either RA or PsA, we all have fibro, IBD or IBS, all the girls have Sjogren’s disease, and my sister has MS. So sorry your daughter may have it too. Good luck to her! Take care!

  • Cookie
    8 months ago

    Hi. I have been taking MTX for the past 5 years. I started with 10 pills every Friday night. At that level, sorry too tired to run upstairs for dosage, I was in what I used to call my MTX coma for the whole weekend. I would sleep the days away. After several months I started getting migraines lasting from Saturday to Thursday, repeat. My rheumi then reduced my dosage to 6 pills every Friday night. The migraines went away and though I sometimes sleep very late on the weekends I am not in the trance I was before. The down side to the reduction was that my joint pain went back up though my psoriasis was completely under control. I now take Enbrel injections once a week along with the MTX. The point to remember is that there are now a lot of drugs available. You need to see what doses and what types work for you. Give the MTX a chance and see if it helps. I too was worried at first about being immune suppressed but have found over the past 5 years I do not catch colds any easier than before, but when I do they last longer than they used to. Not a fun side effect, but something I accept as my new normal. I bruise easier but not constantly. I tried Humira for a month only. My psoriasis came raging back almost immediately because you cannot take MTX with it. I could not risk the skin on my palms and feet just cracking off to give it a real chance. Again, we are all different and you need to find your right plan. There is no cure as we all know, but sometimes just having the pain and symptoms back down a degree is better than nothing. I hope MTX works for you. Take care.

  • BobbieClaire author
    8 months ago

    Hi Cookie,
    Thank you very much for your comment. It was very helpful. I was shocked at the high dose of MTX that you were started on! Those migraines must have been horrible. My rheumy started me on 12.5mg which is 5 pills of 2.5mg. I’m terrified of nausea. It sounds silly but I have a phobia of vomiting. I will do almost anything to avoid it. I hope that the Enbrel keeps you in much less pain. Does it cause nausea? If not, I would like to try it myself.
    Thank you again for your very informative comment. Take care Cookie

  • imschmarte
    8 months ago

    I too get the nausea, but the sad part, or happy part for you, is no matter how nauseous I am, I can not vomit. And the nausea is awful! BUT, my doctor put me on a nausea pill, and if I get it, this pill (generic Zofran) does the trick every time!!

  • CathyD moderator
    8 months ago

    I’m glad that you finally have the correct diagnosis, @bobbieclaire. So many people report being misdiagnosed with something other than PsA initially. I am sorry that you have been dealing with pain and other symptoms for so long without any help though. Hopefully the methotrexate will bring you some relief! Were you given folic acid to take too?

    I can share my personal experience with methotrexate, but should stress that everyone is different. I have only been taking it for 12 weeks I think, so I’m fairly new to it myself. Like you, I was petrified of feeling sick (and all the other side effects I’d read about), to the point that it took me a whole month to talk myself into taking it. I actually think this fear worked in my favour in the end, as it was nowhere near as bad as I had been expecting.

    I usually get some very, very mild nausea at some point over the 48 hours following me taking the mtx, and sometimes I’ll wake up feeling a bit groggy (although that is not unusual for me). As for benefits, it is still early days for me but I did realise a week or two ago that I was walking without pain for the first time in goodness knows how long, but I have experienced the pain again since, so I’m not sure if it was a coincidence or the mtx starting to work.

    As I said above, this is just my personal experience, and everyone is very different when it comes to medication. I was able to find this forum post where community members share a variety of experiences with methotrexate, which you may be interested in checking out: https://psoriatic-arthritis.com/topic/methotrexate-2/

    I hope this is helpful. Will you keep us updated on how you’re doing?

    -Catherine, Community Moderator

  • BobbieClaire author
    8 months ago

    Hi Catherine
    I wanted to wait until I had taken at least 3 doses of MTX until I got back to you. Week one: No nausea
    Week two: Moderate nausea but not too bad.
    Week 3: Doing better but I decreased my dosage from 12 mg to 7.5mg. I noticed right away that my joint pain increased 🙁
    I know I shouldn’t have done that but I read that 7.5mg is the lowest therapeutic dose and I wanted to give it a try.
    I also read that taking an extra 1mg of folic acid 12 hours before taking the MTX and then doing that again at 24 hours after dosing would reduce nausea. It reduced the nausea but I think it interfered with the efficacy of the MTX. My Plaque Psoriasis flared up too. I don’t advise others to try experimenting, it wasn’t worth it. I hope you are doing well my new friend.

  • CathyD moderator
    8 months ago

    @bobbieclaire, thank you so much for updating me. It’s good to chat with others who understand these things we are going through. I had also read that 7.5mg may be sufficient for some people but I have a feeling that would be too low a dose for me (I am currently on 10mg). How are you doing this week? <3 P.s. I have sent you a friend request, I hope that's okay!

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