Scalp psoriasis ruled out - unsure if I should take methotrexate

Hi all,

I've been totally MIA from the forum and am back after a long visit from sister and her family from out of state as well as 5 days at the beach - all good but tiring! Additionally, I saw a dermatologist because I wanted some surety about the PsA diagnosis. To clarify, I did not get a PsA diagnosis but the rheumy I saw (who wasn't the swiftest) told me he thought my scalp sores did look like psoriasis.


He prescribed methotrexate and folic acid - I chose to wait until after beach trip and visit to dermatologist to start.

Rheumy said I had no damage to feet/hands based on x-rays. He also parted with the comment that most of the time you don't ever get a diagnosis that's specific (??). He still prescribed the methotrexate.

But, what if I have fibromyalgia or CFS or osteoarthritis. I feel so confused.

Should I start the methotrexate anyway? I don't see rheumy again until late Aug.

Any thoughts would be appreciated! Thank you!

I had a rheumy like that, one of the 'who knows?' brigade. It is an approach that seems to crop up from time to time. I can see there is some basis for it - after all, PsA doesn't have any particular blood test marker and oftentimes inflammation doesn't show up in bloods - but I too would be happier with a rheumy who actively chases a specific diagnosis. And if he actually used the words 'most of the time' about a non-specific diagnosis, that doesn't seem to tally with the experiences you read about on this site, it looks much more like most people do get a firm diagnosis, eventually anyway.

On the other hand, as he has prescribed Mtx I would imagine that he is confident that you do have inflammatory arthritis i.e. PsA or RA etc. (I get stuck after PsA and RA). And in all fairness I think it is pretty difficult to tell the difference and the treatment is pretty much the same. If he's sure you have inflammatory arthritis but is not sure which type then prescribing Mtx would be the responsible thing to do.

The other conditions you mention aren't inflammatory but did they get a mention in the appointment?

It sounds to me as if things are moving in the right direction .... but the fog is annoying I know. Did you feel that this rheumy was so vague that you just don't have confidence in him at all or was it just the question mark over PsA that left you feeling confused?

Hi Sybil,

Thanks so much for replying -- in answer to your last question, both. Fibro has been mentioned by my general practitioner but rheumy did not. My main question is this --if all my bloodwork is "fine" (no elevated RH factor, ANAs, no inflammatory markers), then how do I know I have a form of inflammatory arthritis? Rheumy did not discuss this w/ me. Since my scalp is not psoriasis, does that rule out PsA for me? And, if I don't have an inflammatory arthritis, should I be taking such a strong drug?

I do have severe fatigue for sure - I teach and I literally slept through my spring break in April, sleeping up to 18 or 20 hours a day! Fatigue has improved some but now I'm on summer break, so there's that. I have joint pain in feet, knees, hip, lower back (sometimes). ALWAYS in the morning and on bad days all day long. The pain is not off the charts by any means, I'm not debilitated or in need of a cane, etc. But, yes, daily stiffness and pain, somedays worse than others. I hobble in the mornings and I hobble around a bit after getting up from being sedentary. I have lost lots of flexibility and have to sit to put on shoes, etc.

I was given prednisone at appt 1 (2 weeks worth - lowish dose) and had NO pain. It was amazing. I believe that means there's inflammation, correct?

But, yes, he was quite vague, has only been in practice a couple of years (was not the doc I was supposed to see), and at appt 1 didn't explain much or ask too many questions. Appointment 2 he said blood work looks good (meaning negative RH, negative CR - whatever for inflammation). He said X-rays looked fine (feet and hands - I told him I also had low back pain and my worst pain in pelvic joints, but those weren't x'rayed.

After he said that he just looked at me, as if we were done. I asked what about the swollen joints on my big toes. He said thats a very common osteoarthritis joint. I felt like he was getting ready to dismiss me.

At that point, I launched into some symptoms and things that he had not asked about during visit 1. I reminded him of my grandmother with RA, my sister with lupus and psoriasis, dad with psoriasis and Reactive arthritis. Told him I'd been tested for the HL 27 (?) gene years ago (when I suffered a bout with very similar symptoms). I told him I had read about PsA and that tendonitis had been a huge issue for me (plantar fasciitis in '07, I think - I brought podiatrist notes- and a bad case of tennis elbow that only resolved with PT). I told him I never thought I had psoriasis; however, I had an extremely itchy/sore scalp and had had sores on scalp for years. I also asked about nodules (very small) on first joint of my fingers. I reminded him of my crushing fatigue.

Finally, he did seem to be listening. He looked at my scalp and said it did look like psoriasis to him. Really? I was skeptical, mainly b/c I felt I was practically self diagnosing here. He said yes it's dry and flaky but would you feel better seeing a derm to confirm? He looked at my fingers (small nodules at first joint on index finger) again and said that joint is also often involved in PsA.

At that point he looked at me and said, ready to try medication? And, he proceeded to prescribe the methotrexate. Told me about not drinking and liver and said it takes a couple months to work.

I left feeling like I had a "working diagnosis" of PsA - when the derm ruled out scalp psoriasis, I felt like I was at square one.

At the point, I began to wonder if I should be taking the drugs.

I'm sorry, I know I'm rambling terribly. I just feel frustrated all over again. I have a sick kitty and am extra tired. The struggle is real. I certainly appreciate the feedback here b/c I feel it's more than I've gotten for my 2 rheumy appt and from my GP.

Thank you!

I see no rambling! This is a confusing disease and it sounds as if your rheumy didn't help with the clarity.

Of course there is always the possibility that you may not have PsA, I'm sure a lot of us were given a bit of a question mark along with our diagnosis at first, but the thing is it is often diagnosed on clinical symptoms alone (trying to use the right terminology here!) i.e. what the rheumy sees and hears. As far as I know there really is no identifying blood marker at all. And not seeing raised inflammation markers does seem quite common. In fact, your rheumy could possibly be better than you think as often people have the opposite problem .... that of rheumys holding back on a dx of PsA despite characteristic symptoms because CRP or ESR are not raised, even though PsA can be sneaky in that respect.

You are quite right about response to prednisone being a strong indication of inflammatory arthritis. And as for the tiredness, well hello from another (ex) teacher! I think the strongest and fittest might sleep through the first week of the summer holiday but when that extended to 3 or 4 completely wiped-out weeks I did start to consider that something was wrong with me! Eventually I got so that I could stay awake for about 3 hours, it was like flipping narcolepsy, really serious fatigue accompanied by an increasing sense of being disconnected from the world.

Mtx is a strong drug but many tolerate it well. It's essential to drink a lot of water regularly, that can help prevent side effects. Although your rheumy didn't exactly equip you to take it with confidence, presumably he is experienced enough not to prescribe it lightly. I guess what I'm saying is that I'd take it, that's my personal view. Partly that's retrospective, I was scared of it at first, but it did help so much with the crushing fatigue and it oiled my joints enough to get me moving again though it takes a month plus to 'kick in'. I think I had got to the point at which I realised the disease itself was pretty toxic.

Derms are not always right! Psoriasis seems to be a difficult so & so to diagnose sometimes.

It's so hard isn't it .... trying to make decisions and make sense of things along with a demanding job and exhaustion etc. I actually think you have got somewhere though.

Claire said:

Hi Sybil,

Thanks so much for replying -- in answer to your last question, both. Fibro has been mentioned by my general practitioner but rheumy did not. My main question is this --if all my bloodwork is "fine" (no elevated RH factor, ANAs, no inflammatory markers), then how do I know I have a form of inflammatory arthritis? Rheumy did not discuss this w/ me. Since my scalp is not psoriasis, does that rule out PsA for me? And, if I don't have an inflammatory arthritis, should I be taking such a strong drug?

I do have severe fatigue for sure - I teach and I literally slept through my spring break in April, sleeping up to 18 or 20 hours a day! Fatigue has improved some but now I'm on summer break, so there's that. I have joint pain in feet, knees, hip, lower back (sometimes). ALWAYS in the morning and on bad days all day long. The pain is not off the charts by any means, I'm not debilitated or in need of a cane, etc. But, yes, daily stiffness and pain, somedays worse than others. I hobble in the mornings and I hobble around a bit after getting up from being sedentary. I have lost lots of flexibility and have to sit to put on shoes, etc.

I was given prednisone at appt 1 (2 weeks worth - lowish dose) and had NO pain. It was amazing. I believe that means there's inflammation, correct?

But, yes, he was quite vague, has only been in practice a couple of years (was not the doc I was supposed to see), and at appt 1 didn't explain much or ask too many questions. Appointment 2 he said blood work looks good (meaning negative RH, negative CR - whatever for inflammation). He said X-rays looked fine (feet and hands - I told him I also had low back pain and my worst pain in pelvic joints, but those weren't x'rayed.

After he said that he just looked at me, as if we were done. I asked what about the swollen joints on my big toes. He said thats a very common osteoarthritis joint. I felt like he was getting ready to dismiss me.

At that point, I launched into some symptoms and things that he had not asked about during visit 1. I reminded him of my grandmother with RA, my sister with lupus and psoriasis, dad with psoriasis and Reactive arthritis. Told him I'd been tested for the HL 27 (?) gene years ago (when I suffered a bout with very similar symptoms). I told him I had read about PsA and that tendonitis had been a huge issue for me (plantar fasciitis in '07, I think - I brought podiatrist notes- and a bad case of tennis elbow that only resolved with PT). I told him I never thought I had psoriasis; however, I had an extremely itchy/sore scalp and had had sores on scalp for years. I also asked about nodules (very small) on first joint of my fingers. I reminded him of my crushing fatigue.

Finally, he did seem to be listening. He looked at my scalp and said it did look like psoriasis to him. Really? I was skeptical, mainly b/c I felt I was practically self diagnosing here. He said yes it's dry and flaky but would you feel better seeing a derm to confirm? He looked at my fingers (small nodules at first joint on index finger) again and said that joint is also often involved in PsA.

At that point he looked at me and said, ready to try medication? And, he proceeded to prescribe the methotrexate. Told me about not drinking and liver and said it takes a couple months to work.

I left feeling like I had a "working diagnosis" of PsA - when the derm ruled out scalp psoriasis, I felt like I was at square one.

At the point, I began to wonder if I should be taking the drugs.

I'm sorry, I know I'm rambling terribly. I just feel frustrated all over again. I have a sick kitty and am extra tired. The struggle is real. I certainly appreciate the feedback here b/c I feel it's more than I've gotten for my 2 rheumy appt and from my GP.

Thank you!

Hi Claire, sorry about your kitty. I'm good at kitty support having owned them for 30+ years and been a cat professional too (PsA brought that career to a grinding halt) but ask if there is anything you think I may have some ideas or tips about ... giving meds etc is my "speciality".

On to you. It's frustrating for sure. Nothing to see in blood work is par for the course so I wouldn't stress to much over that. That you have morning pain and stiffness which eases with activity is on the inflammatory arthropathy check list, as is a positive response to steriods, as is family history. Tendonitis ... plantar facitis ... tennis elbow .... well, yeah! Skin maybe, maybe not. How are your nails? Any pitting, unusual ridging, edges that lift, odd little splinter like marks just under the white/pink margin at the top of the finger? Any callouses on your hands or feet that aren't usual for you? Have you got the book mentioned in the book review section? That is a very helpful patient orientated resource that can help provide a discussion point in consults.

I've got FMS too. That's something my specialist rheumy arrived at once she felt that she'd got medical control of my PsA. It's all taken a while, years in fact, and also for me to start to tease out what seems to be PsA and what seems to be FMS. Especially where the fatigue is concerned. And you know I'm not sure it's clear cut at all. But you have to start somewhere and as FMS will not physically damage you in any way, starting with methotrexate, which is pretty much first line treatment for all inflammatory arthropathies, seems a good move. Give it a go, see how it goes. For some people it's a miracle drug for others just a stepping stone to the next one.

On one of the other Ben's Friends communities I help out on, there is one amazing medical professional who looks in from time to time. He was explaining something to a member and said something like sometimes there are no clear cut answers, in those situations the science of medicine becomes the art of medicine. I'm beginning to think that could apply to alot of our experiences (and those of our rheumys) in trying to get to the bottom of our conditions.

Hang in there :-)

Hi Claire, I thought I'd add a thought or two. I'd be disappointed in your rheumy, too. Is he taking into consideration all of the other family members with auto-immune diseases--especially your dad and sister having psoriasis? Your stiffness--that was a huge symptom of my PsA, because it improved at least 80% after I started Enbrel. And the fatigue and difficulty moving in the morning! Sure we don't use a cane, but that doesn't mean we're not having a big challenge getting out of bed and being stable enough to get around without some sort of assistance those first few minutes.

I'd say, don't give up and maybe a more experienced rheumy is needed to figure this out!

Hi all,

More later, but this is a quick note about my cat. HE IS MISSING!!! I'm worried sick, so Jules please chime in with any ideas!

He is only 2.5 and an incredibly sweet, affectionate, lover boy. I'm divorced with two cats, so they get a lot of mom time. He was locked in garage for a few hours the other night after I did a little yard work. When I found him and got him in the house, all seemed normal until I noticed he had chewed fur off top inch of tail. He then spent the entire night with very odd behavior -- attacking his tail like he was in a cat fight, running in sprints, etc. He saw the vet as soon as they opened.

She chalked it up to fleas (he had 2 half dead ones - wearing a Seresto collar and honestly not too bothered by fleas) and anxiety. Anxiety made sense - I figured he had a panic attack in garage. Took him home with calming collar and treats from vet.

The behavior continued and if anything worsened. I did some research and watched some videos - he appears to have all the symptoms of Feline Hyperesthesia Syndrome (FHS or rippling skin disorder). He continues to gnaw tail so I've been closely watching him and sedating him at night so we can both sleep.

Tomorrow he sees my regular vet who was out on Tue. She's very good and asked me to send video of his episodes.

So, I went to work for two hours - I return and he's MISSING! He had been trying to go out all week but of course I've kept him in. I have a smallish house and have searched EVERY spot -- about 10X! I'm thinking he slipped out unnoticed.

I've been searching and calling to no avail.

Jules, if you have any tips, let me know. Going to search again. Will keep you posted when he's back. If he weren't sick this wouldn't be such a scary situation!

HE IS HOME!!

Thank you all for your great responses -- I will respond regarding the PsA tomorrow. It might be after vet appt at 12:30. You've given me lots to think about regarding the meds and my condition.

Phew! Very glad to hear that!

Claire said:

HE IS HOME!!

Thank you all for your great responses -- I will respond regarding the PsA tomorrow. It might be after vet appt at 12:30. You've given me lots to think about regarding the meds and my condition.

Claire, I'm glad he's home. He will have experienced a lot of panic and anxiety being shut in the garage and it could be that he started to groom as a self-soothing mechanism which then got all caught up with the skin irritation from the dying fleas and it becomes a vicious circle. Whilst it looks dramatic it's probably not hyperthesia ... cats all chase and bite their tails in play, especially young cats (which he still is). I think there could be a lot of behaviour issues at play. Let us know what the vet says. He's likely to take a few days to settle anyway and re-establish his territory and confidence.

I guess I'm missing something. OA is confirmed by X-Ray. You had X-Rays and it didn't show. You responded to a predi round (step 1 of treatment) and now your Doc wants to start some medication to see if it works. What is he not doing? Whether or not you have active psoriasis is irrelevant. Only 1 in three do. Your family history indicates auto-immune arthritis is an almost certainty. What they label it means nothing. The treatment is the same. Even if you did have FMS, they would treat the joint issues. The joints you are mentioning are not all FMS points.

FWIW an accurate DX on AVERAGE take 7 years for most. Sadly many of those folks wait 7 years for treatment and end up like a number of us here with severely damaged joints requiring replacement. or are unrepairable. Sounds like you have a better doc than most.

Of course you take the meds. What have you got to loose besides maybe some pain and joint damage. Sadly response to meds is one of the ONLY ways to know what's happening. Rheumies have a 90% intellectual practice. All have completed and worked as Internists before starting their fellowship. They are not "new" ever. IF you can find one who has a personality to go with the intellect, you have a gem. Baring that, if you have one who is willing to treat, Keep him.