Persistent low level headache and dizziness since moving from oral MTX to injections . . . or just me being odd?

[jbzm]

A little bit of background first.

I'm relatively new to my RA diagnosis (although not RA I fear!) - November 2018. I have sero-negative RA.

I've been under the Respiratory team for years with Inflammatory Asthma and have had bibasal bronchiecstasis diagnosed very recently after a CT scan in the summer. It's not clear if this is my lungs just deteriorating or courtesy of MTX but hey.

I had three blue light admissions to A & E at six monthly intervals, July 2015, January 2016 and July 2016, ending up in Resus each time. Finally, after seeing an Endocrinologist in December 2016 they worked out that I have absolutely no cortisol or ACTH. For whatever reason the adrenals and pituitary glands are just not doing their jobs, and not down to loads of pred for the chest which would be an obvious conclusion, I use pred less than once a year (actually over three years since the last lot!). I'm now on HRT of daily Hydrocortisone, first dose of the day before I get out of bed etc to try and ramp my body up in to accepting the day has started.

The RA diagnosis has served to complicate life further. You live by a book of 'Sick Day Rules' with Adrenal Insufficiency, doubling daily doses of Hydrocortisone when unwell, rolling in to A & E when you can't keep meds down etc so not a great position to be in when taking MTX with rolling nausea. The thought of convincing A & E staff that I'm in crisis when I've taken MTX doesn't appeal!!

So Ra journey so far: started on hydroxychloroquine in November whilst my Rheumatologist checked with the Respiratory chaps whether they would sanction MTX. They did, and that was added a couple of weeks later at 10 mg (oral). Whilst steroids would no doubt have helped with the inflammation, they would complicate the AI situation so massively we didn't even contemplate it. In January 2019 the hydroxy was dropped as I was pretty dizzy. That helped enormously. It also transpired that my mood improved dramatically too, so win-win.

MTX increased to 15 mg in early April and then to 20 mg a few weeks later. The increase had been slow as I tend to react badly to meds. I had some nausea on 10 mg which had lessened, by the time I was on 20 mg it was grim and didn't improve as the weeks went by. I moved to 15 mg Metoject injections at the end of September.

I saw one of the CNS team (really blessed, all lovely) at the start of December and she felt that I'm nowhere near remission and needed a dose increase but as I have an itch without a rash she wanted to be sure it wasn't the MTX.

I saw the consultant a couple of days ago. I hadn't injected the last two Fridays as I've been fighting a chest infection and didn't want to give in to 2 weeks of antibiotics (back to the bronchiecstasis). However, I have felt human over the last ten days!!! I hadn't really clocked that I seem to have had a permanent low-level headache and a background dizziness, not full-on vertigo, just dodgy, since switching to MTX injections. I know the body absorbs them differently but wondered if anyone else has had this? The consultant has suggested a switch to Sulfasalazine, heart sinks at new meds but quite like feeling more me. It's also been nice not to have weekends ruled by brain fog and fatigue these last two weeks.

Sorry for the huge post but thought I 'd clarify the background as this is the first time I've asked anything. I was just wondering about anyone else's experiences. I need to weigh up sticking with MTX or making the switch.

Thank you if you've plodded this far!

[SarahJane926]

You're not alone, I changed to MTX injections after the tablet's gave me bad stomach side effects but I noticed the more I was using the injections the more symptoms I was getting-

I've never suffered migraines in my life but I was getting bad headaches, dizziness, motion sickness and nausea with certain smells and sensitivity to light, in the end I switched back to oral delivery, I also had to lower the dose from 25 to 20 as my liver was inflamed. I don't know why my body reacted the way it did to the injection because it's okay with tablet's but feeling much better now.

[oldtimer]

You are likely to have higher circulating levels of methotrexate from injections. Was the dose lowered when you transferred from the tablets. And you have had a bit of a break from the previous level of methotrexate too. So it could be due to the methotrexate...but I think you should keep in touch with your rheumy team on this for their advice.

[mrdiggs]

That makes three of us !! I tried the shots also and stuck with it for three months trying to give my body time to adjust , it never did. I had nausea 24/7 for three months---not fun.Almost never have headaches but did with the shots ,plus they didn't last as long as the pills. Would take them on a Sunday and by the following Friday was starting to get the achy breakies which would jump all over my body. And have no idea if they are the reason my sinuses have been miserable and nasty. Have gone back to the pill form and only time will tell. Hoping for the best. And now that you mention it I too was a bit off balance at times. Had been chalking it up to age but I don't think so. Seem to be fine for now. Just goes to prove that people react to medicine in different ways and what's good for the gander may not be good for the goose. Hope you are back on the mend and the meds are helping more.If it's not an emergency maybe give a little more time for the oral methotrexate to see if it will work for you again, sounds like you have really had your hands full. Will keep you in my thoughts-stay strong -there is light at the end of the tunnel. AND WE FIGHT ON!!!

[jbzm in reply to mrdiggs]

Thank you all so much for replying.

So, to clarify, I had finally made it to 20 mg oral and, where the nausea (plus altered taste, stomach ache, running to the loo etc) had tailed off over time on 10 mg, life was very grim on 20 mg with no improvement.

I moved to 15 mg injections and the GI issues are largely a thing of the past. a little nausea creeping back but gentle enough that I can just eat my way through it (doesn't do much for the waist line but seems to keep the sicky feeling at bay!). However, the constant headache and unsteadiness is not good. I hadn't really linked it to the MTX until the symptoms cleared up as I stopped it.

Like you, mrdiggs, I too find my injection wearing off so by about day five life is getting more uncomfortable. Good to know I'm not the only one.

I just need to weigh up staying with methotrexate (and, therefore constant headache and dizziness on injections vs really grim, all-consuming nausea for a couple of days a week on oral) or giving sulfasalazine a go. However, if it doesn't agree with me . . . hmmm. Thank you for your kind words.

[charisma]

You have added conditions to consider which I have no experience of. Sounds like a tricky balancing act.

For me, DMARDs do affect my mood (cause dizziness etc too from the start) after three months AND cease to be as effective. But we are all different and react/respond to various drugs differently too.

We all have to balance activity with rest and learn what suits, and observe our triggers for fatigue, headache etc.

Will you see Rheumatology specialist again soon?

[jbzm]

Letter has just dropped through the door, 3rd August.

I am seeing the nurses however on 1st April.

Still awaiting my 6 monthly which then became annual endo appointment, it was due in November, finally scheduled for March but cancelled before the letter even reached me. I could do with all three in one room just for ten minutes!!

Still really haven't got the hang of resting when I need to but that is probably as much to do with the season I'm in as the fact I still need to accept I can't do all that I used to do (I'm 53 so hardly old but not exactly young!). My mum should have had her hip replaced in September 2018, she was diagnosed with a heart murmur at the pre-op, the cardiology appointment threw up an anemia which turned out to be a NHL so on to chemo, shingles after round four so chemo was abandoned. Then had a TAVI to sort out the heart, looks like trauma in that procedure caused an aortic dissection so we nearly lost her at the start of September 2019, she' 82 in a months' time. Looks like she might get her hip for her birthday but it then means I'm on daily visits to her for six weeks, hence the rest issue!

Hey ho, life will slow one day I'm sure.

Thank s for your care.