NEWBIE - Ps Entheritis not PMR -is my treatment making me hurt?
Posted , 5 users are following.
ive been treated for the last six+ years for polymyalgia rheumatica, diagnosed at age 50. I've been on steroids throughout. My mum had the same diagnosis. I also have fibromyalgia which is treated with NSAIDs. Many other ailments too.
i saw my GP a few weeks ago because I've been worried about being on steroids all this time but unable to tolerate any less than 5mg daily. The steroids have never really dealt with the debilitating tiredness I've suffered to the point of falling asleep at my desk! Ive now got cataracts, ostopaenia, thinning hair etc so my GP agreed I needed to see an expert, e.g. A rheumatologist.
I finally received an appointment and probably had the most enlightening experience ever. Within minutes of being seen by the Consultant he asked one question "have you or anyone in your family got psoriasis". I confirmed my youngest sister is covered from head to toe in it and my maternal uncle had some patches on his elbows. Straight away my doctor said it wasn't PMR I had, not only because of my young age, but the family history of psoriasis. He asked loads of questions, looked at my fingers and hands etc and then explained he believed I had psoriatic enthesitis and then explained his rationale. It was like a light going on, especially the bit about being unable to reduce the steroids. My mum was the same and he said she had probably had the same condition. Suddenly it all made sense.
so, after a long discussion, bloods and X-rays, I find myself having just taken my second dose of Methotrexate. I'm also prescribed folic acid. This Is where my reason for posting comes in. I took my first dose last Saturday morning. apart from it wiping me out for the whole afternoon, I tolerated it really well. I've been fine all week. However, had my second dose this Saturday. That wiped me out for a couple of hours but that was fine and not as long as the previous week. However, since yesterday my joints are so painful, much worse than normal. My knees, ankles, wrists, thumbs are just constantly aching, stiff and sore. I don't feel unwell, I'm just so very stiff and sore, I'm struggling to walk properly due to the pain and stiffness. Has anyone one else experienced similar? Will it wear off? Is it something I should be worried about? Will this response likely get worse? Or is it unlikely to be the medication causing it?
loving the friendliness, kindness and helpfulness of this group.
0 likes, 9 replies
borderriever donna1961
Posted
You should also be having frequent blood tests to keep an eye on your white blood cells.
NSID and Steriod injections, with the PsA will cause tirdness this is normal.
Sometimes they may take you of this Methotrexate and introduc you to a different DMARD. If they feel you will do better on something different.
When you stablise on Methotrexate or similar they will then introduce you to another medication of the group Biologics, they work in conjuction with the DMARD. You need to be persistant with these medications and the side effects produced by above can be reallly problematic.
One way of treating any joint pains the use of a TENS OR PAIN PEN may help. Your Rhumi will be able to help with training if required.
Sometimes I use joint ointments, they may help. Showers do not remove moisture from the skin as much as a shower although a bath will introduce more heat to affected joints. Sometimes appointments wilth a Dermatologist can help with PUVA Treatment etc.
I have had this complaint now for around thirty years, I now have stopped using Steriod ointments and use E45. Epaderm and Aquatious Cream as a soap substitute. The latter keeps moisure within the skin.
When using soap try using soap and shampoo products with coconut, honey they retain moisture in the skin
I am now near on sixty seven and the main problem caused by ceams is the thinning of the skin, that is why I use above. I made an error when I started to get Ps in my ear canals the doctor advised Steriod creams and that was it the interior of the ear became red and the Ps made my ears worse. Mosturisers for our skin is very imoprtant try using gentle everyday use creams and things. Still try Steriods, be careful with them
BOB
donna1961 borderriever
Posted
Thanks for this informative response. Fortunately, my skin isn't affected. Still feel unwell today but thinking I may have actuallly picked up a virus as my ears are hurting today. Lol
pat62 donna1961
Posted
I was surprised to find that someone else has received this diagnosis.
I had almost the same conversation with the rheumatologist.
Telling him that I was the only one of my siblings without it. He then informed me that I did have it, in the tendons where it attaches to the bone. He called it psoratic enthesopathy.
I have not found anybody else in the medical proffession that understands much about this.
It was suggested that I started taking NSAIDs. I know from experience that my system is not tolerant of these, and also my brother messed up his stomach taking them.
Doing some research I found out that Ginger and tumeric are natural anti-inflamatories. Made into a tea with black pepper, they make quite a difference to my levels of pain.
I also investigated foods that where inflamatory and monitered my reaction to them.
refined sugar was a definite trigger. I tried resticting my intake of bics, cake and chocolate, thinking that a little would not hurt. But I am now avoiding it all together.
Easter is not the same anymore, but I do not have the pain and stiffness which I also had in the joints you mention as well as my ribs.
I thought I would share this with you in case it might help you. We are all different, but it might be worth a try. Apart from my longing for chocolate, it has no side effects.
I hope you find what works for you
Pat
donna1961 pat62
Posted
thanks Pat. Food for thought, if you pardon the pun. I've been on NSAIDs for years for fibromyalgia. Your diagnosis is the same as mine - Ps entheropathy.
donna1952 donna1961
Posted
I seem to get that same thing the 2-3 days after my Mtx. I'm on 15mg and been on it 5 weeks . I had the same issues you had, fatigue, muscle pain and weakness for 2-3 years but my vitamin D was low and my thyroid was low also( I had thyroid cancer so I'm on total replacement) , then developed psoriasis this fall...so prednisone made me feel better but over all the joint pain ( SI joint) is improved I believe from the mtx.
donna1961 donna1952
Posted
i regularly take Vit d anyway. I'm feeling much brighter as they've upped my folic acid to six per week. Fingers crossed.
maureen52 donna1961
Posted
Hi,
this time last year I was in terrible pain suffering from Psoriatic arthritis in my knees and was living on nurofen and could'nt walk much at all, had to be taken out in a wheelchair until I saw the rheumatologist and asked for methotrexate, that I had, had before. Since taking methotrexate the last 6 months, although it is not a pain killer, I am in less pain, only take 1 paracetamol a day and I am walking a lot better, can go up the garden, hang washing out, go up a few steps, but not up to the high street yet, but that will come in time. With methotrexate it does take 3 to 6 months before any real improvement, but if you can keep taking it, you will get the benefit in the end. Good luck.
donna1961 maureen52
Posted
Thank you Maureen. You answered my question without me asking. I spoke to nurses today and they say the way I am feeling is caused by the drug but also probably cos I've had a virus last week together with the stress of my son's wedding last Friday. They've upped the folic acid to one daily 6 per week ) and already I'm feeling better. My head has cleared, the dizziness has gone, I actually made myself food and ate it too. The question I wanted answering was whether the situation would improve or if I'd continue feeling yuk whilst taking it. I will stick with it, definitely feel much brighter today.
maureen52 donna1961
Posted