Normal Bloods, No official diagnosis, feeling lost :-(

Basicquestions12

Thanks for the replies , I’m really hoping that I tolerate the methotrexate like you have because I really can’t afford to take sick days, as I’ve only recently started the job. I was more curious if anyone on methotrexate had noticed changes in their mood or anxiety levels on it. That’s something I’d be concerned about.

dreamdaisy

The problem with the experiences of others is that they are not you, do not have your physiology, psychology, experiences or expectations. When we begin the DMARDs we are carefully monitored, one man's miracle med is another's disaster but none of us can predict which way it will go for us until we try. I always begin with the assumption that all will be well and it usually is. Whenever I have had an issue with a drug it has been caught by the blood tests or, in the case of leflnomide, the crippling headaches gave the game away.

When people are doing well on the meds they rightly think it's the same for everyone else so don't need a forum. I am doing well on the meds but my definition of doing well would be anything but to others. DD

stickywicket

Basicquestions12 wrote:

I was more curious if anyone on methotrexate had noticed changes in their mood or anxiety levels on it. That’s something I’d be concerned about.

To the best of my knowledge (and I've been on meth for years) it causes neither. I would imagine it'd improve the mood by removing some of the pain. Likewise the anxiety by removing some of the fears about the future.

Of course we get lots of people on here whose anxiety levels shoot up at the mere thought of taking it but it's not the meth causing that.

It's a very safe drug when taken according to instructions, with the prescribed dose of folic acid and the required blood tests. And much safer than gambling with an autoimmune arthritis.

Basicquestions12

Thanks for the replies , it’s nice to know that most people don’t seem to report feeling depressed or anxious on the drug. Today I received my script for methotrexate starting dose 7.5 then up 17.5 eventually... I’m a bit worried this dose is higher than normal? I’ve also been prescribed folic acid 3x weekly in-between. Before I start I need blood tests again for Hepatitis , which I had a year and half ago, but need again. Just really worried about feeling unwell or something bad happening , but I’m glad I have a support group here as there is no local ones in my area.

I’m also considering getting a medical alert bracelet , so many people here wear one? It’s just I’m
Not open with everyone about my condition and I often go out alone, so think it may be a good idea.

Basicquestions12

Oh and I also wanted to know if it’s safe to go swimming on methotrexate? I recently joined a gym , but no sure if it’s safe with the chlorine in a pool. Thanks.

dreamdaisy

I don't wear a medic alert, instead I carry an up-to-date list of my meds in my phone case and in my purse. I cannot see any trouble with going swimming but it would be sensible to wear something on your feet because the last thing you need is a verruca: our ability to heal is markedly reduced by the DMARDs for obvious reasons. When I go to the gym I wipe down the equipment I use before and after with anti-bac wipes.

Tablets can be taken in the morning, midday or the evening, whatever works best for you and 17.5 is not the highest dose I have come across. The folic acid is a supplement which will help you overall. When I first began I had fortnightly blood tests and steered clear of alcohol for three months to establish how my liver was coping. It coped just fine. DD

stickywicket

7.5mgs is a very low dose and you're unlikely to notice anything. 17.5mgs is not the highest. I was on 22.5mgs for a long time but I've since been able to reduce it.

As for a medic alert bracelet - I have one which I hardly ever wear :oops: Indeed, I have it as much for my mild asthma as my meth. I think all that docs would really need to know in an emergency is that we shouldn't have antifolates. If you're being prescribed antibiotics any time ensure the doc is aware you're on meth as there are a few that we shouldn't have though most common ones are OK.

Swimming? I've never heard anyone, doc or patient, suggest we shouldn't do it. Go for it It should help your joints.

But, when you write

Basicquestions12 wrote:

Just really worried about feeling unwell or something bad happening ,

My take on it is that life consists of good bits and bad bits. We all feel unwell at times. Sometimes it's the disease, sometimes the meds, sometimes a cold, a bug, the weather or all manner of things. It can be pointless looking for causes. The cause is life. I had a weird bug last weekend. The world was spinning and it was horrible. But I never suspected the meth as it's not done that to me in about 20 years and I was fine after taking it again this week. It was a bug. It passed. These things happen to everyone. Just swallow the meds and look forward to a better quality of life

Elmbow

Hi. Just to reassure you, I have never had abnormal blood tests and was diagnosed with psoriatic arthritis on scans and history alone.
Methotrexate is a first-line treatment but it isn't something you can take if there's a chance of you want children any time soon (male or female). So I think, given your age, you would be justified in asking for an alternative. I have never taken it due to pregnancy risk. There are other drugs out there.

Basicquestions12

Thanks for all the lovely replies and reassurance. I’m planning on seeing if I can get my first pre treatment bloods taken tomorrow and get the process started. In regards to children I’m very aware of the dangers of being on the drug and pregnancy , That’s why I’m planning on coming off methotrexate April next year , seeing if I’ve gone into remission and if not take another drug as I’m thinking I want to get pregnancy December next year or January 2021, especially as it may get more difficult in the future if the arthritis worsens.

It’s just a very difficult condition to deal with day time day, can’t imagine if I had multiple joints involved. I think hospitals need to offer more free counseling to patients as I’ve received none.

Elmbow

Basicquestions12 wrote:

I think hospitals need to offer more free counseling to patients as I’ve received none.

This is so true. It's been one of the biggest frustrations for me. I see my consultant once every 6 months, but I live with my condition 365 days a year.
I initially had a year of being told there was nothing wrong with me, then suddenly "Oh, you have an autoimmune arthritis after all; take this and come back in a few months".
It's easier now after a few years of adapting, but early on the whole process (the road to diagnosis was long due to negative bloods and frankly some really poor care) was incredibly detrimental to my mental health.
In many areas you can self-refer for counselling on the NHS. I think it is worth getting in there early because the waiting list is bound to be long. The worst that can happen is you cancel it later. I think this is worth looking into.
Have you been able to discuss your plans with your consultant re. future pregnancy? Drugs such as sulfasalazine and hydroxychloroquine are safe in pregnancy and are a good alternative for seronegative arthropathies.

stickywicket

I think the idea of counselling is an interesting one but I'm not sure how it'd work. Do you mean actual counselling or just advice? If counselling, would the counsellor need to have specialised in arthritis? If so, I guess the same facilities would have to be offered to everyone diagnosed with any other life-changing disease - Multiple Sclerosis, Muscular Dystrophy, Crohns, Cystic Fibrosis etc etc etc. It starts to sound very expensive.

I have experience of two rheumatology departments and both offer Versus Arthritis leaflets. There is a whole host of information on the top grey menu on here and also, of course, our Helpline people available by phone, email and on the helpline forum. Personally, I can't think what else I might need but, as Elmbow had shown, you're not the only one to feel like this so it would be good if you could both give a bit more detail as to what you would like.

As for meth, pregnancy etc, I'd try not to plan too far ahead. None of us, with or without arthritis, can see into the future. Wasn't it John Lennon who said "Life is what happens when you're making other plans"? I think one step at a time is the way to go. Planning out the future is surely a route to disappointment.

And no-one can say which month they plan to get pregnant in. I got pregnant with the greatest of ease :roll: and, without contraceptives, would have been producing offspring every year as my grandmother did. Others try unsuccessfully for years. Some things we can control but others we just have to take a more relaxed approach towards. Which is a good preparation for the inevitable chaos of parenthood :shock: in which all the best laid plans......

pinkteapot

Belated reply re starting methotrexate...

My experience of starting on it around three months ago was nowhere near as bad as I expected.

I did and still do feel tired and slightly dizzy and nauseous the day after I take it. It's got a little better over time and it's still absolutely worth it - it's only one day a week and normally my arthritis rages over the summer (mine is bad in summer and better in winter). At this time of year for the last three years I've been in quite a bit of pain, and right now I don't have a single joint affected. I think if MTX were a daily drug so I had the day-after-hangover every day then I probably wouldn't be happy on it, but I can cope with one day a week.

I still work on that day (so it can't be that bad). I know some people are very good and take their MTX on a Friday night (if they work Mon-Fri) so the side effects are at the weekend. I said to hell with that! I work Mon-Fri so I'm not having my weekends ruined or what's the point in living? I take mine on a Sunday night and manage to get through Monday at work. I have a 45 mile drive each way to work and I take it easier than usual on the motorway because I know I'm not quite with it.

You mentioned mood. I have struggled with low mood and anxiety at various points over the years. The MTX hasn't made any difference with that. On Mondays I do feel a bit down and unable to cope if things go wrong - but that's how I always get when I'm tired and the MTX makes me tired. I now have a policy of not making any important decisions on Mondays.

You're lucky you've been prescribed 3 x folic acid a week - my hospital only does 1 dose a week and I do wonder if my Mondays would be improved with more folic acid. :?

As I said though, on balance it's absolutely worth taking - for me.

Tips I've found lessen the side effects (for me) - drink a LOT of water on MTX day and in the hours after you take it. It seems to make me really dehydrated for a couple of days after so I'll also sometimes take a rehydration sachet if it seems bad.

I also have a random one, which you definitely shouldn't follow without medical advice! I read online that in the US some rheumies advise patients to take dextromethorphan, a cough medicine, if they get neural side effects (headache/dizziness). I looked it up and in the UK it's the active ingredient in Benylin for Dry Coughs. I had terrible dizziness the first week I took MTX and asked my hospital about the Benylin thing. They laughed and said they'd never heard of it, but there was no harm in taking it with MTX. Took it the following week (evening of MTX and the morning after) and the dizziness was significantly better. :shock: I've taken it every week since and my dizziness is mild. One week I tried not taking it as Benylin itself makes me feel a bit peculiar, and I felt shocking. So that US tip seems to work!?! There have been a few studies done on it over there but nothing large scale. As I said though, don't take any medicines, even over the counter ones, without talking to your rheumatology line. And my doctors don't believe me that it's doing anything so it could all be in my head.

Don't forget to get all your blood tests done per whatever schedule you've been set. The monitoring is really important to adhere to as problems can show up at any time, even if you appear to be tolerating it well. I'm just about to go down from fortnightly to monthly blood tests which will be less of a hassle.

Basicquestions12

Thanks for all the replies again , definitely appreciate getting support as there are no local support groups in my area. I also find that only my friends that also have chronic illness can truly understand my anxieties about the present and future.

I’m hoping that I can get my pre bloods taken tomorrow as I’ve recently relocated and still waiting for the gp to confirm if they’ll take me as a patient. Does anyone remember how long it took for there hepatitis bloods to come back? I had them like a year and a half ago and can’t remember meber , but it seemed a long time. Just eager to get them started now as I’ve been so resistant taking them since diagnosed , but hoping they help the ongoing flare without really negative side effects.

In terms of employment, should I tell my employer about the medication i take? I’m worried about discrimination even though I know they can’t legally do that.

stickywicket

Pink Teapot, that's a lovely, detailed, reassuring post of how you overcame your meth fears. I think determination was your best asset

I'm sure you're absolutely right in warning others not to try Benalyn without the go-ahead from their docs. Great that it helps you, though.

What a shame your rheumatology department only allows one folic acid per week. Have you tried asking for more? Foods that are high in folic acid (Try a DIY approach ) are:
Leafy green vegetables, such as spinach.
Beans.
Breads.
Cereals.
Rice.
Pastas.

Basicquestions, I don't think I've ever had a hepatitis test. Is it normal now before starting meth?

Re getting your bloods done - I think you'd probably have to wait if you're not currently registered with a GP. When we moved it was simple, though. We just went to the local health centre and asked to join. They did all the paperwork. I'd taken a prescription so they knew instantly which meds I was on. I just had to explain I'd need to see a rheumatologist and orthopaedic surgeon (for my replaced joints) and they fixed me up.

What you do or don't tel your employer is a personal thing. I don't see why they'd want to know about meds. It's surely the arthritis they'd be more interested in. You'd probably be best advised to join your union, though, as a precaution.

Spiderman

Basicquestions12 wrote:

Thanks for all the replies again , definitely appreciate getting support as there are no local support groups in my area. I also find that only my friends that also have chronic illness can truly understand my anxieties about the present and future.

I’m hoping that I can get my pre bloods taken tomorrow as I’ve recently relocated and still waiting for the gp to confirm if they’ll take me as a patient. Does anyone remember how long it took for there hepatitis bloods to come back? I had them like a year and a half ago and can’t remember meber , but it seemed a long time. Just eager to get them started now as I’ve been so resistant taking them since diagnosed , but hoping they help the ongoing flare without really negative side effects.

In terms of employment, should I tell my employer about the medication i take? I’m worried about discrimination even though I know they can’t legally do that.



Hi, been looking through thread, new to forum,sounds cheesy but , I feel your pain, you are going through a similar-denial/try anything but drugs/it will get better on its own-kinda position (hope it does BTW).
If it is like my experience,immune system kicks off,lots of why me? what can i do now?stuff... now after many lows and a few highers, everything is completely under control for now! Stubborn inflammatory marker zero !
Drugs that I hated (Methotrexate) and probably through arrogance, didnt take enough of, now make me feel fitter than I ever thought I would again!!

I now inject what I thought would be a large, but in fact it has no side effects on me, dose once a week of the dreaded meth.( probably safer than the pain killers you would have to take...) This is also coupled with a concomitant dose of bio etanercept clone.

All looked pretty scary on the web (and like all drugs sometimes it can end badly...I took Sulfasalazine and my liver REALLY didnt like it!)

You will need regular blood test to monitor liver function so employer will probably find out anyway.As all going well , it will make you fitter, its a benefit to them.

Dont panic !All this can end well...the drugs and rhumatologist have basically given me my life back !
Hope the baby thing works out ok !They are so worth it.GOOD LUCK!

dreamdaisy

Further thoughts: healthy people struggle with the demands of childcare and children, like arthritis, do not come with an off switch.

Life has nothing to do with what we want or what we think we should have. Life has no entitlements or rights. There are two facts about life: it is uncertain and it will end. How one deals with the former and what one achieves before the latter is a personal matter. DD

pinkteapot

stickywicket - thanks for the tips re folic acid rich foods! I'm awaiting a call-back from my rheumatology nurse helpline to ask whether they'll increase my prescription for folic acid. It seems daft that so many hospitals prescribe more folic acid than I'm taking, and surely worth a try to see if it lessens the side effects?

I am cheating a bit - I still had some lower-dose folic acid tablets from when I was trying to conceive. I take a few of those at a different point in the week to give myself another 1mg. :oops: Don't think it's enough to make any difference though.

Basicquestion12 - re employer - there's no obligation to tell them, unless perhaps you're in some sort of hazardous job where you could pose a risk to yourself or others if impaired? I told my manager but we have a great relationship and she already knew about my arthritis. She's had serious health issues herself so is very understanding. In some jobs I've had in the past I wouldn't have told them though.

Basicquestions12

Really overwhelmed by the positive replies and tips! I have been keeping an eye on the thread , but came down with strep throat yesterday so I’m on antibiotics now. I’ll be getting my bloods done next Friday when I’ve cleared the infection. Just really hoping that strep throat or illnesses like that don’t become more common on methotrexate as I’ve had it twice in less than 6 months.

I also got fish oil tablets yesterday so hoping those in combination with folic acid prevent any nasty side effects. Just quite eager to start now , but realistically it will be another two or three weeks with my current situation and waiting for bloods.

pinkteapot

I was terrified of catching bugs when I started MTX but, touch wood, over three months in, nothing so far.

I've been stressed out when people come into work with streaming colds (one person came in with flu - complete with high temperature!!) but I've snorted First Defence whenever it happened and haven't caught anything. 8)

I'm sorry it's delaying your start. In retrospect, the quicker you start the better as the anticipation is the worst part!