Hello, there, everyone! Since January 2020 I’ve been feeling pain in my back. At the end of the month it got to other parts. My left shoulder, my left foot, my hip(both sides), my jaw on the right side, my middle finger on the right hand got bigger, and my left knee is hurting now too. I tried to get a doctor but everything is closed now due to covid 19. I can only access ER, they prescribed me prednisona+Voltaren. I already tried it from the first time I went to the ER but it didn’t work. This is my 6th time going there to ER. Every time a new body part. What I want to ask you guys is does the pain go away? I can’t stop crying,not just from the pain, but from all the things I can’t do anymore at 27. My psoriasis was almost non existent. But I had a surgery late October last year, maybe that did the trick? My sed is high so is my pcr. I do not have the hla b27. God, I even started praying whisking it was some bacteria but the doctor said to take that thought out of my head. My appointment to the specialty is only June 2nd. If they don’t change it. Thank you, for reading my cry for help.
Hello Carlos, and welcome.
Have you been diagnosed with Psoriatic Arthritis yet? Or does a non-specialist doctor think you have it?
If this is Psoriatic Arthritis, there is a lot that can be done to help. Many of us start with much pain, tremendous stress and worry. Very often things do improve considerably with treatment.
I understand that you are young and what you are going through must seem unbearable. Please take it one step at a time and know that things can get A LOT better. You may be able to get back to a much more normal life, though that would take a little time. Stay strong.
What bad timing … Covid19 is going to make things harder for now. Are you able to rest when you need to? And how about gentle exercise? Regular exercise can be very, very helpful, it can help to reduce pain.
So glad you joined this forum. I’m sure you’ll get some great advice here. Keep talking to us every time you need to.
Hi, @Sybil, thank you for your kind words.
I only visited non specialist doctors (the ones that were in the ER when I had a new body part hurting) and they directed me to a specialist for psoriathic arthritis but the appointment is soooo far away. (June 2nd)The doctors I saw they said it was psoriathic arthritis, but I doubted them as I only have a little psoriasis on my ears, but when I got home to take a shower I looked in the mirror and I had-i still have, my body full with red spots. And in that night my finger got swollen. With all the remaining body parts hurting too I came to the same conclusion. I try to come up with a problem with an easier solution, from time to time, but I can’t find one. Having another problem where I can fight it, a nemesis that I can hate would be better. How am I supposed to fight myself? I try to walk the most I can but if I move to much, on the next day, I won’t be able to move. I do sleep but sometimes I wake up during the night with pain mostly from my jaw or hip. Or when my big toe on my left foot starts to get numb I wake up fast so it doesn’t go down on me too. I can’t get the best medical help available thanks to the virus and that’s leaving me a little helpless. I try to be positive but the pain doesn’t go away. And the stupid part is that I never took pills because my body was a "temple " and now I pop in every thing in front of me hoping it’ll stop the pain. Because my temple is in ruins.
Nothing is ruined, this is a big challenge but you are very likely to see big changes, good changes. When I was diagnosed I couldn’t walk, I couldn’t stay awake, I screamed in pain. Well today I was out in the garden digging up rubble. I am often found up a ladder, I’d be on a walking holiday now if it wasn’t for the virus. And I’m 64 … you must be much stronger than me so just think how things might turn out for you!!
You may want to run, to walk fast, to play football etc. … but that’s for later. So when you walk, stop before things get too bad, well before. Exercise regularly, but not the way you maybe used to, not yet. It seems crazy but even doing ‘leg lifts’ twice a day will help - little exercises that seem silly are the ones for now.
So many of us on this forum have said pretty much the same thing!
Please hang on in there. I’m sure others will want to reply to you soon. Like me in the UK, you’re in a different time zone from most of the members who are American.
Hey, I’ve just remembered my profile pic was taken in Portugal!
Hi Carlos! The gap is always a bad place to be, and being there in the midst of a pandemic just makes it worse. The gap is the time between diagnosis and a treatment that works. You’re in the thick of things.
I’m in NY, and the specialty doctors are open still. I actually just got a cancellation yesterday to see a specialty doctor, because people don’t want to go out. I completely understand it, but I’m in the middle of a health situation that waiting until June was not really ideal.
Does the pain go away? Yes. Once you find a good treatment, if you’re lucky you’ll start to see relief within the first few weeks, but it might take a few months. Getting on a good treatment earlier is ideal, because it means that you may not have experienced any joint damage yet.
I was diagnosed fairly young, with one small spot of psoriasis on my knee. Everything flared up, and the fatigue was awful, and I had a 9 month old baby when it hit. I needed to nap more than he did! I was started on a daily NSAID right away, but it took about nine months before I started on a DMARD (disease modifying med). I’m actually not sure why we waited, except that I was still nursing my little one. That baby is now 13 years old, and my daily pain level is manageable, most of the time. I still have fatigue, but nothing like I did back then.
Do you have a general practitioner that you’re able to get in to see? Right now it’s MUCH better if you’re not going to the ER. They may be able to start you on an NSAID, or do something for the moment.
Hi Carlos,
From what you’ve said the doctors you’ve already seen really to think this is PsA. And certainly the symptoms you’re describing sound very much like it.
Like you, my symptoms came on all of a sudden after some surgery to fix a bunion on my big toe. Basically I never recovered. That was 4 years ago. Now with treatment I have little pain but I remain on treatment for it to keep it that way.
Look online and research PsA, having knowledge about how it works helps or it does me. Bascially your immune has gone insane and is needlessly inflaming you.
The good thing about that is that often what is hellishly painful today might not be hellishly painful in a month’s time, something else will be instead. So don’t panic about new body parts getting painful too much, later it’s likely many of them won’t be quite so painful. In otherwords what starts out painful often doesn’t stay painful. When I discovered that it was such a relief, I can tell you. Things generally remain painful though if the inflammation isn’t quashed as that means it can damage your joints.
Instead of going to the ER is there a GP you can see instead? That GP might be able to prescribe you anti-inflammatories which can help take the intensity of the pain down and that helps. And that in turn might help you till you get to June.
Sadly Coronavirus is messing all health care systems up just now, but do try and see a GP.
Meanwhile keep popping back in here with all your questions and have a good look around too - there is loads on this site which might help you.
Hi, Sybil, @Stoney and @Poo_therapy, thank you so much for your support.
I tried the new medication last night (I’m from Portugal) and I woke up today with almost no pain!
I took a nsaid and a corticoid (prednisona).
I noticed this time they prescribed me a higher dose. I slept well and I can open my mouth again. And I only took one pill (from each).
@Stoney, the pain is constant if I move the affected parts. If I remain frozen still it doesn’t hurt. I saw me GP, but the nsaid she prescribed didn’t make a difference.
But, anyway, I’m feeling better today. Ill survive till June and hopefully the covid 19 will be gone by then.
May I ask you guys what medications do you use? I don’t like the idea of taking pills every single day. Well, no one does but I feel a little pain in my stomach when I take them.
And surgeries can you have them being on immune suppression medications?
I’m sorry for all the questions.
Is your taking an NSAID and/or prednisone, please ask your doctor about taking something to prescription your stomach while you’re on them. Some people are really sensitive, but all people need protection. I’ve been taking omeprazole for that. As you progress onto a disease modifying med or a biologic (or both) you won’t need to take the stomach protectant anymore.
Most countries you will need to follow this type of progression, but depending on your doctor you may be able to get on a biologic fast. Some doctors will use a combination of meds. Personally, I take a biologic, a disease modifying med, and an NSAID when I have a flare. I’m not thrilled about the meds, but they do significantly allow the progression, and keep me mostly functional.
Did you find the newbie section yet on the site? There’s some great resources. Here’s the link - https://discussion.livingwithpsoriaticarthritis.org/c/a-newbies-guide-to-psa/18
To answer your specific questions… You can have surgery on biologics. They may need to be held temporarily, and then go back on a few weeks later.
With pain when moving, I wonder if you’re having tendon related pain. Often people can feel pain to the touch. Looking back, that’s what I started with when I was in my twenties. Supposed overuse injuries, with no actual overuse. But it was typically just one area at a time, so there wasn’t any reason to suspect anything bigger. My 17 year old daughter already has a diagnosis of juvenile arthritis on this basis.
Here is a history of my medications;
First year because I was scared of DMARDs (very stupidly) just pred and anti-inflammatories but with stomach protector meds too. These are essential for both these meds as otherwise you could get an stomach ulcer.
Then I tried a DMARD called mxt - it didn’t like me. So I swiftly moved on to another DMARD called sulfasalazine. It liked me and worked for a around 7 months (having been on it 4 months without it doing too much) till my disease progression overtook it. Remember all the DMARD class of meds take ages to get going - at least 3 months but usually nearer 6 months.
Then I tried my first biologic, a biosimilar of enbrel, called Benepali. I took it for 11 months but it only really worked for 3 of those 11 months. Nevertheless it also helped keep things at bay more even if I still had pain and incapacity.
Next I tried a biosimilar to Humira called Imraldi. It also really didn’t like me so I only stay on that 8 weeks.
Lastly I’ve just started Cosentyx since last November. It appears to love me and is helping me an awful lot.
In addition to my Cosentyx I take some tramadol and an anti-inflammatory called Arcoxia with omeprazole as a stomach protector.
Sadly each of us reacts differently to all these meds so what works for one person might not work for another. And they can’t tell yet which meds will work better for which person either which is really frustrating because it means you simply have to try them and see.
Sadly as PsA is an auto-immune disease that means it can never be cured only managed. So yes you will have to be taking meds pretty much for forever. PsA can also wax and wane and go into flares and then subside down again. But you must still keep taking your meds as those meds are aimed at making your immune system persistently behave itself. Its ability to misbehave never stops.
Surgery and our meds tends to be a no. That means they will have you stop our meds for a some time before and after any planned surgery. Stopping and starting our meds also comes with risks that when you re-start them again they might not be as effective as they were before. So all these things are a balancing act best done by the doctors.
So presently the meds you are taking are merely helping with symptoms as they’re not DMARDS. We can’t take pred for very long as it messes you up considerably and causes all sorts of problems the worst being osteoporosis since it leeches calcium from your bones. In an ideal world you should be offered a DMARD drug and see how you get on with that. Once you start those types of meds, you’re then truly trying hard to make your immune system behave better and that’s always the goal with treating PsA. That’s because having a more normally behaving immune system means you don’t get pain, swellings and incapacity so much.
Hope this helps. Given coronavirus please keep your distance from other people when taking the pred and voltaren too.
Welcome Carlos. I also had the annoying psoriasis in my ear canals and then my eyelids. It was diagnosed as “Inverse Psoriasis”. Its the same psoriasis but tends to be on any soft sensitive skin, inside of elbows and knees instead of outside.
Take the prednisone as prescribed and keep a personal diary of your day to day experiences. I was first treated with 50 mg prednisone and in 2 days I felt like a super hero able to lift buildings and do way more than before! Be very careful that you don’t injure your joints because prednisone can make you feel “healed”. It would be of interest to us to know what dose and how long you will be on prednisone. I crashed badly about 2 weeks after I came off of a 10 day prescription at 50mg/day. Be patient, don’t try to see too far ahead and take each day as a gift. We tend to be given what we need for each day of life…the future will unfold for you to respond to in all sorts of ways. Perhaps you can arrange a video appointment with a rheumatologist…even on screen you could show your concerns and pains. Peace.
Hello, everyone.
It’s been day two on pred(I’m taking 20mg) I’m felling ok-ish. The med was prescribed for a 12 day period…i wonder how ill react after I stop it. I bought the stomach protector yesterday, I had to took my mom to the hospital, she had an infection in her bladder (we’re defenitly cursed) and I remembered your advice and bought it. I took it today after waking up and it didn’t hurt my stomach after I took the other meds, so thank you guys!
About the meds, I felt better the first time I took them and now I don’t feel BAD but I don’t feel good either. When I go to sleep it’s like my legs are numb, like they are not mine. It’s a weird feeling but the pain is way more tolerable and i regained some color on my face which is a nice touch. I’ve been trying to keep a positive attitude facing the issue but, you know, sometines when I’m felling happy and try to do some thing that I’d normally do my body says “nop” and I get a little down specially knowing my birthday is coming. I’ve been reading about the meds and hopefully one will like me andd the pain will become just a figement of my imagination. Fingers crossed. Once again, thank you for you support!
Hi,
glad to hear things are a little better with the pred.
I was wondering … do you think it might be possible to get a telephone consultation - or Skype or something similar - with the rheumatologist?
Rheumatologists need to do a physical examination of joints, they do need to see you in person. But these are strange times. Perhaps, given how difficult things are for you, you could get some sort of contact with a rheumatologist before June.
Obviously I have no medical qualifications or training at all, but your symptoms do sound very typical of Psoriatic Arthritis. There’s a slight possibility that a consultant might prescribe something more than pred based on what you say and what he or she could see on a video call.
You could ask …
Delighted to hear you’re doing a little better.
Hopefully you’re taking all the pred prescribed for the day, first thing in the morning? It works much better like that and hopefully then doesn’t affect your sleep too badly. Be mindful that pred can make some people really grumpy commonly called ‘roid rage’ and can make other people overly positive and a bit high really, so more impulsive etc etc. Is your daily dose the same every day at 20mg or is it eventually tapering down as in a lower dose each day later on? You can get sort of low and overly emotional when you stop it too. But that does pass. The highest dose of pred for PsA tends to be around 30 mgs per day. But say if you suffered from asthma the highest dose would be around 60 mgs per day, which might help you perspective wise.
Delighted too you got some stomach protectors, they really help comfort wise if nothing else.
Hopefully your mother is doing a little better now too, bladder infections are totally horrid things to suffer. Poor woman.
Have a decent and calm weekend.
Welcome here, Carlos! I’m so sorry that you have this disease, but I am very glad that you have joined us! It’s a miserable affliction for sure, but I can’t think of a better place to be, or a more positive place to “hang out”. The news and facts here aren’t always good, but it is always supportive.
One good piece of news is that the prednisone has eased the pain. That means that the pain is inflammatory, and the fact that the prednisone alleviated your pain is another piece of strong evidence to suggest that you have PsA. And knowing what you have is the first step to feeling better. So you can look forward to that: it may take a bit of time and experimentation, but you will feel better and be able to get on with your life.
Ask lots of questions, or hang out here for the company. We’re happy to have you, although it’s too bad you had to come looking for us.
Seenie
Welcome, Carlos, terribly sorry to hear about your pain, which so many of us have felt in very strong degrees at onset, and glad you joined, personally found important support from this group, advice on measures to take is precious in these cases. What happened to me in situations of dire pain was a change in diet, which together w medication resulted in improved symptoms, in my case was stopping carbohidrates, grains ,sugar. The result was decrease in pain after a few days. Avoiding gluten. Hope you will proceed with improvement with your condition, all the best,
Thank you everyone else for the tips and the amazing support. It’s nice to receive it when everyone else thinks this is nothing…
I was feeling better on the first days of the medication but now that I’m reducing the medication I’ve been feeling worse. Specially in my jaw and hips. I noticed that I feel worse on the day after having dairy. So I started cutting it but it’s difficult for me as Im so used to it. But I’m trying.
During this time where we are forced to be locked up I dyed my hair - blonde(Im bored) .
I’m telling you this because when I dried my hair and during the coloring I could see some red-ish. . But, finally, when I was closing in on 60, things snowballed and I felt like how you’re describing your situation—like absolute crud in or near almost every joint in my body—except my knees and hips!
I feel so thankful that I lived a pretty good life because my PsA didn’t hit me hard when I was young like you. I did have terrible insecurity about the psoriasis on my scalp, legs and elbows, though, and even on the hottest 90 or 100 degree days I wore 3/4–length sleeves and jeans!!! Ugh, what psoriasis and PsA do to us!!!
The prednisone gave me huge short-term relief as you’re describing, but prednisone isn’t good to take long-term. When I finally agreed to go on Enbrel 5-1/2 years ago, it was a lifesaver! It still is! I don’t take anything else for pain, other than a rare Ibuprofen or Tylenol for some severe pain I get in my feet (I have damage due to long-term not getting aggressive treatment for my PsA). No matter, I still have few complaints.
I will tell you, I have the red scalp—no flaking, either. It gets very sore and my dermatologist told me it’s like psoriasis under the skin surface. Just washing my hair and massaging my scalp helps.
You have my best wishes for some better relief from the prednisone and maybe some remissions from the acute pain. Don’t overdo it—but mild exercise is helpful. Icing and heat help, too. Sorry to hear this all came on so suddenly. Yes, the surgery could have caused stress that triggered all of this!! Quitting smoking caused my psoriasis—I always wondered had I never quit would I never have gotten psoriasis?
Take care and good luck!
PsA is not ‘nothing’. It is a strange disease though … some symptoms may come & go … then come back. Some symptoms can be vague and difficult to describe, it’s very easy to tell ourselves that such symptoms are ‘all in our heads’. It is a disease that can mess with the head. We have to be strong but generally speaking the strength required builds up over time.
Well that’s the bad news but the good news is still that once you get long-lasting treatment there is a very good chance of life becoming much easier and better.
Yep, I’ve had psoriasis on my scalp and it made my blood run cold too. Do you see a dermatologist? That’s going to be on your ‘to do’ list if not.
I’m not sure why your pics didn’t show up. I think you should be able to upload more than 1. Try going to ‘edit’, hitting the upload icon and go thru’ the steps again.
You hang on in there. Do all the things that usually make you feel fit and well but get some extra rest too. Folks who get PsA young usually do lead normal lives - I’ve seen loads of 'em here over the years - getting good jobs, travelling, partying, finding partners, having kids - all that stuff happens for those who are determined. But at the moment you’re in a tricky spot and need to ride it out till you can get good treatment and that treatment starts to change things.