I have a question for you psa veterans. I have read that blood work showing normal ranges for inflammation is not always an accurate guide for what is happening inside the body to those with psa. Is this true? I ask this because every time I get a test done my blood work seems to be in normal ranges. I am currently taking cosyntex. Here is the deal though-- if you were to ask me how I am doing I would say not that great and point out that my psoriasis is inflamed and I am getting new spots. Not counting how I feel with pain and new symptoms. To me I do not think I am making progress. If my skin is inflammed, joints hurt, new places hurt, flares, and continue to have brain fog and fatigueâhow can the treatment be said to be working? Thanks for the feedback.
Well, itâs complicated, and Iâm far from an authority.
But my laymans understanding is that IF you show high inflammatory markers whilst not on treatment, they can be a good way to track how your treatment is the working.
For the almost 50% who do not (me included), they seem to be pretty irrelevant (unless you have the flu, or dengue, or Salmonella⌠but thatâs a whole other story).
Then generally your disease (and impact of medications) would be tracked by symptoms instead.
Thatâs been my experience as well. Seronegative. No raised inflammatory markers. We track based on symptoms, including number of swollen/warm joints, patient report, etc.
New places hurting. . . not irrelevant. But your doctor is looking at the big picture. Are the old joints still hurting? Evidence of swelling? Limited ROM? Changes in what you can do?
And with the psoriasis, isnât it the amount of coverage rather than specific spots? And as my husband recently discovered, stubborn patches may benefit from a biopsy. He discovered that his hard to treat patches were psoriasis and warts. Surprise!
So let me see if I am hearing you correctly. So inflammatory markers are not necessarily going to show how in fact one is doing while receiving treatment? So how does one gauge if the treatment is working? Will you have reduced symptoms? So what I have read is true? That inflammation markers are not telling the whole story and should not be used to gauge progress? I feel this myself just based on how I feel and I do not feel great. What is one to do?
Generally, all my usual spots are acting up. Lower back, mid back, neck back area. Muscles in these areas feel sore and achy. Fingersâmid joints, wrist, knees, hips. New thingsâribs from of stomach around ribsâfeels like to many sit ups or perhaps trama from being hit. Elbowsâfunny boneâsporadic. Foot right top side of ankle. Chronic fatigue that is particularly draining and brain fog varies from bad to wow I cannot think. All these areas the muscles are sore and I am quite stiff. Generally on swelling I only swell if I do repetitive motions.
Walking does not seem to bother meâexcept for being sore. Arms and hands will swell if I do motions that are repetitive. Psoriasis is really full body but was somewhat controlled until a year and a half ago. I have had it since I was 9 to varying degrees. Always elbows, scalp, knees, legs, back, face some, hands, toes, ankles, However, since starting Humira I had almost complete remission. Then after a couple years it stopped working and I noticed that my psoriasis starting coming back then after hands started swelling upon use. That is what clued me in and ultimately lead to my diagnosis. I am now forty one years old.
Two years ago I got my diagnosis and it has been up hill from there. I have went through several biologics but cannot seem to get a handle on my symptoms. I am now on Cosentyx. Current psoriasis coverage is pretty much everywhere and my psa symptoms are out of hand. For now I would just settle with getting reductions in my psa symptoms. I can deal with the psoriasis but I have found that usually when one is bad so is the other. I was under the impression that generally if one is uncontrolled so is the other. So I should be shooting for improved symptoms then? Is that what you suggest? I am grasping at straws at this point. Any advice or help is appreciated.
As for heatâI get heat from anywhere I have psoriasis. Sometimes I noticed heat or what feels like swelling in fingers, toes, and wrists. Neck and back as well. Range of motion dependsâif I am having what feels like muscle cramping on those areas of the back or the ribsâusually limits how I can stretch. It is like working out a cramping muscle.
Ditto to other responders here.I am seronegative, no blood markers at all. I monitor medication effectiveness by symptom severity and side effects. I am on humira and measure success by change to symptoms
Sounds like my dr. does not have a clue⌠How do you verify if youâre seronegative? He points to blood tests and I keep telling him I am not doing well at all. I should not be surprised I guess. I will be seeking another doctor.
How do you verify that youâre seronegative? Your blood work is ânormalâ, it doesnât indicate disease or inflammation.
A good rheumatologist doesnât really solely on bloodwork. Theyâll do a thorough exam every visit, feeling every joint for inflammation, check your mouth, eyes, etc, range of motion. You get the picture. Ask questions about stiffness, when it occurs, how long it lasts.
Okay, thanks. I should trust what I feel. Thanks for the feedback.
I agree with everyone. My Sed and CRP are within normal, but I hurt all over. I am HLA-27 negative. My rhuemy told me that blood work didnât mean much except to see if I had RA.
It can be tough, this situation. I have no doubt that Humira is working for me but sometimes I do have issues that I want addressed, even if only to help me understand them better. But with nothing showing in blood work and little swelling Iâm officially such a big success story that itâs a case of âNext!!â
My approach is to try to get the issues down to 2 or 3 main ones and to describe them very well but as briefly as possible. Sometimes I fail miserably and then have 6 months to repent! Even so, I keep trying. Thereâs not really much time to get our concerns across.
Also, I admit that sometimes I think I have an intractable issue (fatigue is my main bugbear) but a little more effort on the lifestyle front does indeed help. I think we have to be ruthlessly honest with ourselves about whether we are doing all we can. Biologics donât necessarily make pain or fatigue go away, but exercise has a very good track record in that respect, it can really help and being more conscientious as well as more imaginative about forms of movement etc. can make a big difference.
Not everybody has a great rheumy, I hope you can find the best one possible if youâre going looking. But meanwhile some of the annoying and difficult things youâre describing may be amenable to more input from you.
One more thought, do you see a dermatologist for your psoriasis? âCoverage pretty much everywhereâ does not sound good at all.
Hi @Woodwormâyou answered your own question!!
The general feeling of massive fatigue, aching, joints that act up, brain fog etc. is your bodyâs way of showing you what isnât showing up in your bloods. Your disease is active in your body. Like you, Iâm seronegative. But the bloodwork is still really important to document any liver enzyme changes or other subtle shifts (Iâm always borderline anemic but it is worse when Iâm in a flare). When the medicine is working optimally to control your symptoms will be when you donât ache, you can think clearly and youâre not exhausted.
Iâve been through a few biologics this year and Iâm on Cosentyx, too. I just saw my rheumy and heâs doubled my dose (was on the low dose) to try to get me over some lingering symptoms. We might back off the doubled dose in a few months.
Finding a physician who will listen and who gives you the feeling of working with you is not always easy. Now, mind you, often times the physician SHOULDNâT listen to the patient, but there are ways of making a patient feel at ease and that they understand whatâs going on. Seems thatâs missing from your interactions right now. Iâve was lucky to have a TREMENDOUS rheumy when I was diagnosed. And even for as good as he was I was still left with a thousand questions after every visit. And I would, as you have done, come here to find answers. Itâs frustrating but eventually you learn how to listen to your body and how to ask the questions that matter when you have that brief window with your doctor.
Thanks Tamac.
@ SybilâYes, that describes how the situation is. The Dr. comes in and points to the blood tests and all but what feels like ignoring my symptoms and points to the great success that this biologic is doing. Mean while I am thinking okay maybe I should get a second opinion. He does not seem to listen well. Its like he does not understand the disease or something.
Good advice, I will try to focus on the changes next appointment and shop around for a doctor that is known in the state for being considered a pro or expert. I have found that even with non specialist doctors that they do not always turn out to be great listeners and if it does not fit usual thing encountered they do not adjust well. Same applies to the patient of course. That is the thing. I am willing to listen and give them the benefit of the doubt but to not have honest good feedback from a doctor is very disturbing and it feels like you are just running around in circles screaming that you head is on fire and the doctor replies no no it canât be thatâthere is no smoke.
I did see a dermatologist before I got this next disease. My skin does not respond to steroid creams and such. Biologics was the most effectiveâwas. When I say all over I mean that I have areas that are spotty but lack the massive scales most folks have. It looks like a reddened raised super rash. If I was to give a percentage I would say roughly half of my body if all the spots where all together. But the coverage is literally located on almost every part of my body. It has changed how it looks throughout my life to where it is now. I super shed skinâless so while on biologics.
@ JaneatiuâYes, I believe you are right and my body is telling me that things are not right. So what I should expect unlike currently is that overall my symptoms should improve when something is working wellâexcept maybe when I am in flare. Did doubling the dose work well for you?
I can deal with a doctor who knows his stuff but does not agree with me. I just need one who can listen to me and adjust if needed. If he would just share with me what he knows and describe to me what is going on I would feel better about it. I think I just need to find a good rheumatologist. It is not a good feeling when you think yourself that your doctor is not doing what can be done to help. Thank you for your advice.
Thatâs it! Youâll know youâre doing better when you are doing better. I know this is sounds like an oversimplification, but thatâs about the gist. In other news water is wet and fires are hot! But seriously, how youâre feeling and how youâre able to cope with lifeâs daily routines are the easiest measures. The chart your doc has you fill out (or perhaps not?) that indicates how well you can walk, ties your shoes, fasten your buttons, whether youâre stiff and achy first thing and how long that lastsâŚthose assessment of your âdaily functionâ are crucial to assessing your well-being. You might even want to track some of these yourself.
Too soon to know about Cosentyx doseâit hasnât been a week yet. But thanks for asking!
I recall you didnât tolerate Mtx well? Just saying because my one major psoriasis flare up came along when Humira was doing a great job on the PsA but a few weeks after I stopped Mtx. 9 months later I re-started Mtx, at quite a low dose, and the psoriasis cleared up rapidly.
However psoriasis is such a ⌠I wonât say what I think of it âŚthat what works for one of us seems very, very far from guaranteed to help another. But it could just about be worth asking whether a low dose of Mtx might help ⌠if you can bear thinking about that!
Yea, I never fill that out⌠I have doubled in humira but I did not notice any improvements when I did that. I have liver enzyme issues last time I took mtx. He pulled me off of it pretty quick.
The only suggestions, besides all of the wonderful ones by others, are that, if you havenât already, consider the length of time you have been on the new medication and the average time it takes for the medication to work. Second, regardless of everything, if you do not feel like your doctor is helping you, then look for another one. I mean if you walk out of your appointments and have severe misgivings, itâs not you. I went through 2 doctors before I chose to stick with a third. My blood work never shows the inflammation and I did have a breakout right before the Humira I was on began to work. Last, you may want to consider your diet, stress level, and physical exercise in CONJUNCTION with the medical treatment with drugs.
Thanks, good advice. I think my doctor lacks something that he should know. That or he wants to believe what he is doing works and my reports of symptoms does not appear to get through to him.
Sorry to hear this WoodwormâŚfor me, I can tell Enbrelâs working even though I have some bad psoriasis on my leg and both knees, and a little on my elbows. My main problem is my painful left foot, but itâs not inflammation like it was before I went on Enbrel. My hands get âfizzyâ at night but are fine during the day. Iâd say I have 75-80% overall improvementâ90% improvement of inflammationâand Iâm satisfied with that. In your case, it doesnât sound like you have anywhere near 80% â itâs understandable why youâre frustrated!!! It sounds like your doctor doesnât pay any attention to youâif heâs not noticing your severe outbreak of psoriasis and ignores that you have so much pain!
Maybe increasing the Cosentyx will do the trick!
Iâve always wondered why doctors stick with specific doses when peopleâs pain/symptoms can be so varied. Iâd say I had moderate psoriasis and moderate psoriatic arthritis, and the ânormalâ dose of Enbrel is working as well as I expected. But, someone like you, who has such severe diseaseâI mean, really, shouldnât doses automatically be higher? Actually, I started with a double-the-normal dose of EnbrelâŚhas your doctor started with double doses with all the biologics youâve tried?