Is this normal

[Castroll]

Hi all hope everyone is as best as can be.

I have posted before, diagnosed with inflammatory arthritis or sero neg Dec 2018 , I am currently on sulfasalazine since July last year 500mg X 4 tablets, a day and etoricoxib 90mg X 1 a day, and I am on levothyroxine 75mg per day for underactive throyid. I am 45 year old female.

The question I have is the sulf dose the maximum, I have my next RD appointment in Feb.

I have felt better being on medication, but I am still having aching joints and bad fatigue.

I work full time and have felt a bit unwell since the weekend when I feel like this I nap for a few hours, then feel a bit better after rest, today I got up to go to work and could not get out of bed, I slept till 1pm and stayed in bed most of day, which means I have slept for 14 hours, I have only just got up to make a cup of tea at 5pm . This can't be normal, or is it.??.

Do I need to increase meds, ( can the sulfz meds be increased by specialist) or change meds, or is this normal and I have to find a way to live like this, I will ask at next RA appointment, but wanted everyones opinion, advise, experience.

Sorry for the long post

Regards

X X

[Hidden]

@castroll I am sero positive and RA OA and sicca. However my biggest issue for over 7 months has been the fatigue. It is crippling for most of the day and I hate that I wake up from a good sleep to still feel tired.

Everyone on here will say you need rest and rest means rest which I am still teaching myself to do ie no hosework or activity just rest.

Reduced work hours from 40 to 24 over 3-4 days to try and get on top of it. Just moved to MTX injections and hoping this helps reduce fatigue.

[Castroll in reply to Hidden]

Hi deeb

Thanks for the reply, I am guessing that no matter what meds we are on we will still have some symptoms to look forward to. I have already changed my career for a less stressful one, with slot more less pay, I want to reduce my hours but financially I can't.

[Hidden in reply to Castroll]

I hear you on pay I know I will need to be reduced pay later this year but it is tough.

[nomoreheels]

Hiya Castroll. It will depend on how your Rheumy prefers to treat but your SSZ dose but, for RD anyway, it could be increased by another 1,000mg up to 3,000mg daily... I'm afraid I don't know if it would be different for IA. Sometimes though they prefer to add another DMARD, or try a different one altogether. See how you go, you may be harbouring a bug which has caused the increased fatigue, could just be things catching up on you. I'd write down how you’ve been feeling just as you have here then it's clearly remembered to discuss it with your Rheumy when you see him. If you continue to feel like this & you feel otherwise well then I’d ring & see if you can get a Rheumy nurse appointment, or you could wait as your Rheumy appointment is this month, play it by ear. It doesn’t necessarily mean this is how it's going to be, it can take a few tries before we find the best for us. I'm sure your Rheumy will be able to reassure you.

Let us know how it goes.

[Castroll in reply to nomoreheels]

Thanks for your advice, I will be taking a note book to my next appointment

Thank you

[Pinkypie2018]

Sulfasalazine can be increased to six tablets a day but its best to discuss with consultant. Maybe a change of medication or maybe adding another dmard might help you. But you have an appointment coming up this month so just be honest on how your feeling and I'm sure your rheumatologist will decide what's best for you.

[Castroll in reply to Pinkypie2018]

Hi pinkypie

Good advice thanks

[Thingybob]

I think the max dose of sulpha is 6 x 500 per day.

May I kindly suggest that it may be worth you having your thyroid function checked. I needed to increase from 75 mg to 100 mg of levo as my levels had suddenly dropped again after about 12 months after a diagnosis of RA . This was even though I had been perfectly fine on 75mg for years previously, before RA. Increasing the dose of levo helped.

Its difficult to know whether the fatigue is RA related or thyriod related but a thyroid function test will help to know.

Good luck

[Castroll in reply to Thingybob]

Hi thingybob

Yes the thyroid, I never thought about the dosage, I will call GP tomorrow

Thank you

[MissMinto in reply to Castroll]

Hiya,

At the same time it might be worth getting your Vitamin D levels checked and a full blood count to rule out anaemia.

Fatigue occurs in all three scenarios and of course it’s part and parcel of RD.

Good luck and hope you get to the bottom of it.

[Hidden]

I’m S negative too. I was just on methotrexate tabs for the first 2 years . Last year it went out of control the Fatigue ( this word doesn’t cover it) totally disabled me some days could not leave the house and most of last year just passed me by. Had to let go of my dream job reduced my hours to one and a half a-day on the Verge of giving up work. Sulfasalazine and Hydroxychloroqine were tried along side methotrexate injections but I was allergic to both. 4 th week of a Biologic ( don’t want yo jinx it) but starting to pick up 🤞🏻.

Sorry talking about me ... back to you fatigue as you describe it means your disease is active along side achy joints . Keep diary and photos of any swelling to show your Rheumy. Good luck

[Castroll in reply to Hidden]

Hi j

Sorry to hear meds not agreeing, good luck with the ones your now on.

Photos I had ready at last appointment with RD nurse 5.5 months ago, she was not interested in seeing them even though she suggested I take them, but I continue to take them for history to shie on next appointment. It's a good l

Idea. Thank you

[Mmrr in reply to Castroll]

The fatigue is so difficult to deal with. It might be useful to keep a daily record of how fatigued you are too. I do a quick note in my journal A..meaning no fatigue, B a little but can get on with life, C quite fatigued, struggling to do things, D wiped out can't do much, E in bed.

[Castroll in reply to Mmrr]

Hi mmrr

Thanks for the journal tip, I will do this too, as I keep one anyway

Thanks

[Luna20]

Normal for me before I was put on steroids.

[Castroll in reply to Luna20]

Hi luna

Thanks, I trust steroid work well for you, I just find that if the bloods come back ok ISH, the RD department don't want to do much in the way of perscribing other medication . Maybe I need to fight harder

[Luna20 in reply to Castroll]

The steroids are just short-term while the RA drugs take their time to work (hopefully). My RA onset was in Sept 2019. I'm on a tapering dose.

[Castroll in reply to Luna20]

Thanks

And good luck

[LondonLinda]

When my inflammation continued to develop, couldn’t even turn on the ignition of my car, was sleeping or stretched on the couch between working and two teenagers, I got an emergency appointment with RA consultant. Took me off the salz and put me on methotrexate tablets and etanercept injection. Within a month my life changed. So chin up, there is hope out there to get the RA more under control and allow you to get on with living.

[Castroll in reply to LondonLinda]

Hi

That's a relief to hear, there hope thank you

[LunaParry]

I am RA seronegative as well, and I suffered from severe fatigue in the first 2 years of treatment (having a full-time job and a baby!). The Rheum insisted that fatigue was part of RA, and there wasn't much to be done. For other reasons I consulted the GP, who advised taking iron for a blood count just under the normal range (at the Rheum clinic I was told (by someone on the phone) that the blood count was a "little bit low, but it was fine, no treatment needed"). Well, in the end, after a month under iron, the constant fatigue disappeared! Now, if I overdo (like a long walk during the weekend or a very full-on week), I have the odd day when fatigue is back, but not daily as it used to be. Just mention it, in case it is worth to look for another cause? Good luck X

[Castroll in reply to LunaParry]

Hi luna

That's so helpful, regarding the iron as on and off most of my life I have been on iron tablets prescribed my the doctor. Last 8yrs I have not. I have written this in my diary and till mention this next RA appointment.

Thank you

[Tardebigge]

Hi Castroll, I have struggled for 30 years with seronegative RA and hypothyroidism and have acquired several other autoimmune conditions ,including pernicious anaemia - when I'm close to my next B12 injection the fatigue often escalates. I agree to check your thyroid levels and up your iron intake but might be worth checking B12 as well ? Good luck!

[Castroll in reply to Tardebigge]

Hi tardebigge

Thanks, does B12 levels automatically get checked when we have blood test before RD appointment or will I need to Ask for this to be tested too.

GP wants me in tomorrow for blood test to check throyid and inflammation levels

[Tardebigge]

No, Castroll B12 is an extra test, usually requested if there are signs of anaemia with specific red cell changes ( no idea what!), then if they suspect pernicious anaemia they do more tests to check whether you can absorb B12 by mouth or need regular injections. My immune system is totally dysfunctional and I need B12 injections and Popeye levels of iron to scrape up to the lowest 'normal' level of haemoglobin so fatigue is a constant feature without any other causes! But with excellent help from the NHS I kept working at some level until Christmas when I eventually retired at 69, so enlist all the help you can and do as much as suits you

[Castroll in reply to Tardebigge]

Hi

Wow that's so helpful

Thank you