ESR and CRP rising

[Awwy]

Hi

I posted recently about how I was feeling with my latest flare and adding sulfasalazine on top of taking full dose of methotextrate. Unfortunately I have not had to stop taking sulfasalazine because of the side affects and waiting to see consultant again.

(Rheumy nurse instructions- I didn't just stop taking it)

However I'm a bit alarmed by my latest blood results.

My ESR is 43 - it was 49 so slight improvement.

However my CRP which was 4.3 has gone up to 7.

Explains why I'm struggling I have a lot of swelling, finding it difficult to use my hands and my legs and feet are quite swollen. Extremely tired. My sleep is non existent at the moment.

What is an acceptable level of ESR and CRP in the UK? Does you think sulfasalazine has increased my CRP instead of helping?

I'm on an anti inflammation diet have been for years. So I'm really confused as to what is going on. My consultant keeps saying I have mild mixed connective tissue disease but treating me for RA at the moment. Lupus seems dormant.

Any reading or insights I would be grateful for. Any questions for consultant or blood tests that I can ask for?

Thank you

[helixhelix]

It took me three months to adapt to sulphasalazine, as had rather explosive digestive effects but I was pretty desperate for it to work. Which it eventually did. This is not a criticism for you for stopping (or wanting to stop?) as everyone has different effects and tolerance levels, just a reminder that sometimes we have to take things one day at a time.

The norms for each blood test should be on your lab results as there is some variation between labs. But often what is more important are the trends. Have your levels been steadily rising or is this a sudden change? CRP can rise and fall pretty fast.

If you levels are rising and you don’t have an infection/cold/etc then your disease is just getting very active and the 2 drugs are not holding it down. The sulpha is very unlikely to be making it worse! As I said it did nothing for ages, and then it suddenly did!

[Awwy in reply to helixhelix]

Thank you for your response. I think i do have a high tolerance level for drugs. I've had endometriosis for 25 years which has been very severe and was on so many drugs for it with loads of side effects. I had an op for it which didn't go to plan and I had 5 months off work recently. I'm a single mum with 2 kids and no support and I can't afford to take anymore time off.

My flare started 4 months post op and has been getting progressively worse. My ESR level has been bouncing around 38 and 49. My CRP was 3 but steadily been climbing - hovering around 4 until my latest report where it's jumped to 7.

I have not had any cold, illnesses or bugs.

Like you said it maybe the disease becoming more active. 😔

[Blackberrywine in reply to Awwy]

I reacted very badly to sulpha. Definately made everything much worse for me. Some people just react very badly to certain drugs. It was certainly the worst drug I've taken in terms of side effects. It's now flagged on my medical records. I believe quite a few people have issues with it. Particularly awful if you have a young family to care for. Everyone suffers!

I wish you well and a speedy recovery from the pain ad swelling.

[Awwy in reply to Blackberrywine]

Thank you that's made me feel much better. ❤️

[medway-lady]

I don't know about SAL as never used it but CRP might, or could be down to some infection or other and there's a lot of bugs about these days. I've had the cold and cough from hell for last 4 weeks it's been awful and everyone I know has had it or has it. Feeling ok now but once the cough starts it just goes on and on. So could your symptoms also be a flu bug. Its just worth thinking about and I'm sorry but I (and this is just my personal viewpoint) but as a celiac ( medically diagonosed ) I can't see or understand how any diet could be anti inflammatory. It is in my case a genetic diagnosis and I'm really glad of medications. Trouble is there is no one size fits all and they all take a good while to work so often things can get worse before getting better. I'd suggest a diary might be helpful and would not worry to much about a one off blood result unless its drastic and in your case it doesn't sound as though it is hugely different. I'm so sorry not to be more helpful and think it might just be a case of wait and see for another few weeks.

[Awwy in reply to medway-lady]

Hi thank you. I suppose it making sure that the food I eat is as fresh as possible. Nothing processed and cut out sugar from my diet. It was something that endo nurses emphasised.

Now I just eat like that..

Thank you for the advice.

[Blackberrywine in reply to Awwy]

I'm on a fairly strict keto diet. Eating less sugar and highly processed food is a good thing and certainly works for many people. Good for you! There is much more research coming out now on diet and autoimmune conditions. Even my GP mentioned at my last visit. Unheard of!

[Awwy in reply to Blackberrywine]

I have found foods that I feel worse after eating so leave them out. I have felt the Benefits of the diet. Thank you for responding.

[Blackberrywine in reply to Awwy]

That's good. I went keto for the horrendous migraines with auras. I no longer have them.Everyone finds their own path.

[medway-lady in reply to Awwy]

Then it does get a bit difficult as the thing that gets me is that the term anti inflammatory diet might imply that those who don’t eat healthily are responsible for their illness. I cook , don’t eat much processed food although to chop an onion is a process, do like fudge and have had RA for many years. Celiac for over 40 years too. If diet could treat RA then I’m convinced the NHS would prescribe it instead of drugs. This is just a difference of opinion everyone is different but I’d rather say I eat a good well balanced diet with the odd treat. In fact I have CKD and currently reducing potassium due to a blood test result but it’s not diet that caused the issue but the medication Trimethoprim. So sometimes these things are just s—s law.

[wilbertjellyfish]

My last CRP was 26....I thought this was great. Anything under 30 is good for me. I know under 3 is normal, under 10 is still ok if you have a long term condition. I was diagnosed 8 years ago and am still trying to get it under control. I never worry too much about bloods as I've found in the past they don't necessarily correlate with how you feel. CRP changes on a daily basis and if affected by many things so don't focus too much on one thing.

[Awwy in reply to wilbertjellyfish]

Ah.... 7 is a drop in the ocean then. I think I'm trying to sort of understand what's going on. Only just picking up what flares are like as it has been under control until this one which seems to be wiping me out. Thank you

[wilbertjellyfish in reply to Awwy]

It's not easy but I go by how I feel. Rest and recuperate. Hopefully you feel better soon

[Runrig01]

A CRP of less than 5, is considered normal, between 5-10 indicates mild inflammation, and between 10-100 moderate inflammation. Your rheumatologist is unlikely to be concerned with such a small fluctuation. A mild virus could give such a reading. CRP is seen as the more accurate at indicating inflammation, as it rises quickly, whereas ESR rises slowly, and can be affected by different factors. In women under 50, the ESR is usually less than 20, if over 50, under 30 is considered normal. Factors like anaemia can increase ESR. CRP is the preferred reading for inflammation. It’s unlikely that the sulphazalasine has caused either to rise, but depending on the side effects, it may be you weren’t absorbing the drug, and therefore getting no benefit. Hopefully you’ll get to see the consultant soon, and did something you tolerate better.

[Awwy in reply to Runrig01]

Thank you. I'll bear that in mind now and not worry too much about what the readings are if 10 to 100 is moderate then this is just phase I'm in. 😊. I'll keep chipping away.

[Mostmoses]

CRP at 7 isn't really a big deal (5 or less is normal), though I also agree that you are right to watch the trends. CRP does rise and fall quickly and can be pretty extreme during a flare (mine's been over 150 and higher once or twice). Hoping you'll be able to relax and get some rest soon!

[Awwy in reply to Mostmoses]

Wow 150 😱. Having now seen what the numbers mean from another post what mine was seem pretty tame. So I understand now I always thought it should be 2 or less. This has made me feel better. Thank you

[Mostmoses]

You are still correct to watch the trends! We are all different and we need to be proactive to find what works for us. Goid luck!

[Sebastian247]

I'd also bear in mind that the relationship between CRP level and experience of pain / discomfort isn't linear and differs for individuals. I have been in a lot of pain / swelling and still had relatively low CRP. Best wishes. I'm in quite a lot of pain right now and have significantly swollen hands and ankles but my CRP is less than 5. So a low CRP doesn't always mean free of pain / discomfort.

[Awwy in reply to Sebastian247]

This is true. Just trying to find some correlations. I suppose a flare is still a flare regardless of bloods. Thank you.

[oldtimer2]

It certainly looks and sounds like a flare. You might need steroids to get it under control and longer term a change in medication. I can't remember if you are on a biological treatment? If not that needs discussing too.

It's tough getting a flare, it's difficult remembering what normal life is like, it can be all-consuming just staggering from one task to another, giving up and sitting or going to bed. But they do get better! But be prepared to fight your corner and be a nuisance until your medical team helps you.

[Awwy in reply to oldtimer2]

Not yet on biologicals. This is the next step I hope when I see consultant in a couple of weeks.

[medway-lady in reply to Awwy]

Don't be in a rush and look for biologics they also can have considerable side effects too. And it's a pathway which is followed by the NHS no biological or bio similar I've had has worked as well as LEF which was stopped because of CKD which wasn't caused by it. A lot of the issue can be down to the fact that unlike antibiotics RA meds take a long time to work so we can expect to feel better faster than is realistically expected. As I said before keep a diary and that will help you to remember what to ask the Consultant as your next appointment. If your joints are swollen and inflamed then take some photo's too.

[Awwy in reply to medway-lady]

I keep a log of photos and write symptoms down. My consultant is good in that way as I can email them over to her. She usually calls me straight away. Maybe like someone else suggested steriods for a short time thet have helped in the past. Though my injection 2 months ago didn't really make much of a difference. I started of with hydroxychloroquine which was fine for a year and then I developed an severe allergic reaction to it and was diagnosed with glaucoma. Moved onto methotextrate which has been really good. I've had complex medical conditions. (Acute kidney failure was in ICU fir 8 days on dialysis) so for years been on methotextrate and steriods on and off until now after my op. This has been going on for 8 months and getting worse. There maybe something else she can try. Seeing her in 2 weeks. Thank you, you just prompted to ask more questions. X

[medway-lady in reply to Awwy]

I do understand I spent 3 weeks in ICU plus 1 in renal hospital some 8 years ago. I have a low stage 4 CKD through medical injury and a button hole as yet unused but it’s coming.

[Awwy in reply to medway-lady]

Aww bless thank you so much for you wisdom. I really appreciate it. X

[Sebastian247]

It sounds as though we're in similar situations. I was taken off all meds in December due to side effects of DMARDS. And now, no great surprise the symptoms have returned, so am on steroids whilst waiting for an appointment to be prescribed Hydroxychloroquine. In the past I haven't met the criteria for biologics, hence I'm to try another DMARD.

I agree it sounds like your having a flare. I hope you get the help you need at your appointment. Best wishes.

[Awwy in reply to Sebastian247]

Thank you. I hope you find something that works for you too. I was a bit nervous about posting, but just hearing from people who have the same issues and have lived with this longer helps to understand that little bit more.

[jackNruby2]

Hi my rhumy team like to see crp below 10 & esr around the same Good luck

[Awwy in reply to jackNruby2]

Thank you

[Tauruslittrow]

Should ask your rheumatologist if you are a candidate for a biologic (TNFi, antiCD20) or oral small molecule (JAKi).

[RA22345]

Really hope you get some answers and improvement soon.

The blood results help doctors understand what's going on and whilst 7 is above normal range, I've had times where it hit 250 and am still here with it back down to 1.

Try not to worry, keep lots of notes about how you feeling and make sure you present them at your consultations. All the best 👍

[Awwy in reply to RA22345]

Thank you. Given that people have had CRP in the hundreds, I'm not that worried now. I'm developing an understanding of bloods, and everyone's replies have helped.