Blood tests all normal but feel terrible

[Nettac]

Hi there

I've been reading posts for a while.

I have PsA and take leflunomide 10mg for this. Last couple of weeks I've experienced awful night sweats (bed soaked!) some swelling in toes and top of foot. Plus back, hip pain and exhaustion. I had the usual blood tests for someone taking a DMARD, and all fine!

I spoke to nurse from rheumatology today. My bloods weren't back then, they must have just come through. I can access them on line. Nurse said she will arrange an early appointment for me to see doc.

Do they just go by blood results or will they take into consideration how I'm actually feeling? I felt sure that my inflammatory markers would be up. I had the pouring with sweat at night thing before medication. It stopped until recently.

I suspect that I'm feeling a bit rubbish now the steroid shot has worn off. I had one in my butt in November.

I'm pretty sure I'll be dismissed as a neurotic!

Any experiences in having normal bloods and still feeling rotten.

[medway-lady]

How long have you been taking the Lef as it takes a while to work. It may be side effects if you've not been taking it long.

[Nettac]

Hi Medway-lady

I've been taking the leflunomide since November. I don't think it's side effects. I have some joint swelling.

[Hidden in reply to Nettac]

I have PsA too. I was deemed to have failed Leflunomide because it didn't tackle my swollen joints. Additionally it made me lose a lot of weight.

My bloods were fine too. Not everyone with PsA shows inflammation in blood tests even when the disease is quite active. I did have high ESR and CRP at first though, but once I started DMARDs they returned to normal levels.

Is Leflunomide your first DMARD? If you have 2 or 3 swollen joints and have failed 2 or more DMARDs you may well qualify for biologics.

[Nettac in reply to Hidden]

Thanks Postle2

Exactly the same as you, in that I had high inflammatory markers to start with. Blood tests were all over the place in the beginning with lots of things being out of whack.

Have had several steroid shots, which sort things quite quickly. I was also given sulfasalazine to begin with. Never again! Awful drug. Can't take methotrexate.

I'm certainly better than I was in some respects (not quite so stiff) however joints still swell, and I'm knackered. My toes on right foot are now quite clawed.

[Fra22-57]

It does make you wonder.According to my Rheumy mine ok but how can you be if you in agony with your joints swelling.I can't do nothing with hands cos of this.They seem to look at blood results and pass it off.

You are definitely not neurotic.

Go into appointment and be crying so they can see how bad it is for you.Ask what else they can do.Have you tried hydroxychlorine?

[Nettac in reply to Fra22-57]

Thanks Fra22

I'm not keen on going in upset. I was genuinely upset for about two years as I couldn't get anyone to listen to me. Docs don't seem to be aware that you can be seronegative. I was just written off as a nut!

These days I tend to avoid docs like the plague, until things get really bad. Sad but true.

[Hidden in reply to Nettac]

When you say that docs don't seem to be aware that you can be seronegative, do you mean that they were looking for RA and didn't consider PsA? 'Cos PsA is a different disease.

I too found that DMARDs eased stiffness. But only Humira tackled my swollen joints. In my experiences good rheumys are VERY keen to see off joint swelling as it's a strong indicator of potential joint damage. I think it's increasingly accepted that traditional DMARDs may not control disease activity in PsA as well as they may do for RA. I assume that's one reason why the biologics bar is lower for PsA patients. There's symptom control and there's disease control - they are not the same thing, the latter is key to safeguarding joints.

There are a couple of centres of excellence for PsA in the UK. I've just got on the list at one of them which means a long journey for appointments but then they don't come around too often. I was prompted to get a referral there by a scarily 'PsA ignorant' appointment at my local hospital (have recently moved house). Yet previously my rheumy understood PsA and its funny little ways. A rheumy with great knowledge of this disease is worth his or her weight in gold, it makes such a huge difference.

Leflunomide is known to make some people feel pretty unwell, I doubt you'd have trouble ditching it. I tolerate just about any drug with ease but not the Lef. Would you want biologics? I reckon they're the smartest drugs for the disease by a long chalk.

I do think it's important to learn to love your doctor. I hate doctors appointments but am in awe of the good specialists who have saved me from much misery. There can be some with poor bedside manners who nonetheless come up with the goods. Others who are just all round stars. The ones to avoid are those who let you languish on drugs that are not adequately controlling the disease. It's hard work keeping as well as possible isn't it? Trying to objectively examine the quality of care we're getting is one of the million tasks that help with that.

[Nettac in reply to Hidden]

Hi Postle

My problem has been with GPs. I was left in agonising pain for well over two years. Despite both Achilles being swollen, and all my toenails falling off. I was so stiff when I saw GP, he had to help me out of the chair! I'm afraid my trust in my GP surgery has been damaged.

I have had some lovely docs. I realise that not all doctors are bad. I've just been unfortunate.

My rheumatologist is good.

[Nettac in reply to Nettac]

I'm not sure GPs are aware that folks can have seronegative inflammatory arthritis. Mine kept telling me i didn't have arthritis because it didn't show in bloods.

It was like banging my head on a brick wall.

[Hidden in reply to Nettac]

Ah! Two years was about the length of time I played here we go round the mulberry bush with GPs too. Relatively speaking, 2 years is probably not a bad diagnosis delay where PsA is concerned LOL! (That's a bitter LOL). Great to hear that your rheumy is good.

[Downtime]

I havePsa and my bloods have always been been normal . I'm on methotrexate 15mg weekly and slow release NSAIDS 1600 mg daily which seems to be working ok at the moment. If your joints are painful and swollen you definitely need a new treatment plan.

[Nettac in reply to Downtime]

Thanks Downtime

I'm waiting to hear from rheumatologist.

Anyone had skin peeling off tips of fingers?

[Pamelah5]

I was diagnosed with Seropositive end of October 2016. Was asked by consultant whether I've had a trauma such has a car accident, I replied yes had 2 car accidents in the last 9 months. She told me that's what's brought on my RA.

I too am suffering terrible night sweats bed is soaked!! They said it could be the medication, to see how it goes. At present taking Methotrexate injections 10mls along with other meds. I also have steroid shots in my butt till levels are correct. They do take night sweats and how you feel into account. You shouldn't feel neurotic from telling your symptoms if you don't say they won't know, I tell them exactly how I feel, I also get upset. I have not yet been able to come to terms with this terrible disease.

I wish you well.

[Nettac in reply to Pamelah5]

Thanks Pamela5

I think I had an inflammatory response after a double knee operation. Although, I think things were rumbling before then. Loads of weird rashes, and dodgy, overactive thyroid.

I'm afraid my experiences of telling doctors exactly how I feel has often fallen on deaf ears, or else it's all been put down to depression. And of course, I was depressed. Mostly through not being listened to!

I'm not quite sure how depression can cause bilateral Achilles tendinitis, swollen toes, and skin rashes, and stiffness? I was only really listened to when I got raised inflammatory markers, and even then I had to push.

The night sweats came long before the steroid shots. I suspect it happens when things are a bit inflamed.

[Pamelah5 in reply to Nettac]

Hi Nettac.

Depression is part of RA. No depression does not cause joint pains or swelling which they know. Although it's their profession if I'm honest you might not always get a nurse who's sympathetic.

I too have been low. Burst into tears quite easily. Nothing to feel ashamed. Rheumatology nurses and consultants they listen and try to understand. Mine told me they have not got RA themselves it's hard for them to understand fully. When they see the blood results and examining joints they should treat you accordingly. If your not being listened to maybe you can see someone else in your clinic.

My night sweats also came on before the steroid shots.

[Frankiefarr]

I have RA and have just started taking lef which has worsened my symptoms. Despite being anti ccp positive my bloods are always normal and my inflammatory markers are never up despite swelling and pain. It's why my rheumatologist says they never go on blood tests alone

[Nettac in reply to Frankiefarr]

Ah thanks for that.