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AIBU?

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Original poster

Feeling a bit scared ....rheumatologist on monday

59 replies

Changednamesorry · 13/05/2017 13:49

AIBU to shamelessly post here for traffic?
I have had pain on and off since I was 15....always comes and goes and I am very active. I just had my second child....all fine
...but then I got sick when he was about 9 weeks....not sure if mastitis or UTI or what but since centre then the old pain is back but worse than ever.
Haven't had it for 2 years....hands are a bit swollen, terrible crick in neck, knees hurting a lot..takes me an hour of hot shower and hot rice packs and an anti inflammatory and stretching before I can get the boys ready for school run etc. School run is 2 miles walk twice a day.
Also up until recently I was carrying my baby in a wrap until one morning my knees just hurt so much I could not do it (he was 6.75kg) and I put him in the buggy....we live in a second floor apartment and for 3 weeks I have been dragging the buggy up the stairs or taking my son (now 7.4kg!) up then putting him in cot and running back down for buggy....usually 4-6 times a day. Now I have tethered buggy to bottom handrail and explained to neigh ours that I just can't. He is also a baby who wants be held in the "tiger in the tree" for long periods (last night 30 minutes of dancing in this position!)
Also due to baby and general poor sleep habits since forever I am on getting about 4-6 hours sleep a night.
Anyway....so. lots of aggravating factors. I went to GP on Monday and she arranged a blood test for Wednesday....I get a phone call on Thursday morning saying there are high levels of rheumatoid factor....and I'm seeing the rheumatologist on Monday (in Spain hence fast turnaround. ) I also was only 1 point off being deficient in vitamin D.
I'm in generally good health....a little heavier than normal ay the moment as baby is 14 weeks old and I haven't lost all the weight yet Blush but I'm not massive....I'm 9 stone 4 and 5"3. Normally about 8 stone 4.
I'm afraid. I'm scared I have rheumatoid arthritis and what that might mean for me and my family. I'm also scared in case it's something else worse. I'm praying that it's something minor that will go away...but I have been in agony for weeks now. I'm terrifies of the drugs I would have to take if it is R. A. I'm breastfeeding so wouldn't be able to start most of them for about a year when I finish I guess.
I guess I am looking for.....reassurance? Others experiences? I don't know. My partner is away for the next 10 days (other side of the world away!) and I'm just worried. Putting on brave face but actually pretty scared.

OP posts:
GoldilocksAndTheThreePears · 14/05/2017 18:36

I just wish I could be on methatrexate right now. I was on for about 2 months so just starting to feel affects from it but the move buggered everything. I did try to see if someone, anyone, could inject for me but my GP didn't offer that service. I'll put up with the intense side affects 2-3 days a week to be more normal/painfree the rest! I want to get off PIP and get back to a job.

RandomMess · 14/05/2017 21:00

Methotrexate doesn't have to be forever, DH only took it for around 6 months (yes it made him unwell for 48 hours each time) once per week but he's not needed it again since 5 years on. Yes he gets exhausted if he catches a mild cold, some days he has more pain but nothing like how ill he was when he had his initial episode.

Flowers
Original poster
Changednamesorry · 14/05/2017 21:57

The thing is
...I am sort of all right once I have forced myself out of bed in the morning, taken ibuprofen, had a hot shower etc. It takes about 1-2 hours but the difference is significant.
I am (thankfully) getting a few hours each day where I am in little to no pain. I just hope and pray that tomorrow brings a result that is manageable. It's all a bit of a shock. 😔

OP posts:
Original poster
Changednamesorry · 15/05/2017 14:11

Update- have to go to hospital for scans but rheumatologist told me to get ready as I will need to stop breastfeeding and get on medication ASAP
I feel really sad but at the same time I trying to look at the positives and get on with it. I'm scared of the medicine but I'm more scared of ending up with severe joint damage so I shall be doing what the doctor tells me to do.

OP posts:
GoldilocksAndTheThreePears · 15/05/2017 14:21

Thanks for the update! I was wondering how you got on. Hopefully this is catching it early and will be managed well. I have regular scans and xrays just to check the progression, that's normal.

Good luck! It is a shame about breastfeeding but the sooner the better with drugs, better a parent who has full use of their limbs and fingers with no pain than longer breastfeeding, sadly.

Original poster
Changednamesorry · 15/05/2017 15:58

Indeed. That is how I trying to look at it. Thank you I do feel quite afraid though

OP posts:
AlaskanSnow · 15/05/2017 16:07

Changedname It is good you are getting the medication you need. As Goldilocks says, you are better off at full strength.

Can I crash and ask a few questions please?
Those that found symptoms went away in pregnancy, when did that happen? I am 15 weeks and no signs of symptoms going.

Also, what medication were you on during pregnancy? I was on hydroxychloroquine and naproxen which I was told was safe for ttc and pregnancy, but the obstetrician has just taken me off the naproxen and I'm having such a hard time since then.

Copperpaws, I have palindromic too. I've not spoken to anyone else who has it before.

Wecks · 15/05/2017 16:12

I have palindromic. It started around the menopause but interestingly I did have joint pain post natally after both DC. I just take hydroxychloroquine and go through good and bad phases. I find that any stress sets it off, emotional or physical. So colds, viruses but also injuries.

Original poster
Changednamesorry · 15/05/2017 16:21

I don't know yet whether I have rheumatoid normal or palindromic...I have to wait for the next appointment and scans etc.

OP posts:
high5sportsnutrition · 15/05/2017 16:21

Good luck with the medication OP, I have a friend with RA and it has changed her life for the better Flowers

Fintress · 15/05/2017 17:15

Good luck changed. You will start feeling much better once you start medication.

Original poster
Changednamesorry · 15/05/2017 17:16

Oh I hope that will be the case for me! It's all quite a lot to process

OP posts:
TommyandGina · 15/05/2017 17:31

Hi changed.

I take methotrexate, by injection, every week for psoriatic arthritis. It has helped, not a miracle cure but definitely a big improvement on my symptoms. I am also trying one of the newer biologic treatments called cimzia. Whilst they do help with some of the swellings etc (my big toes almost look normal!) I still have take pain relief most days, and always at night to allow pain free sleep.

I can understand you are concerned, as a fellow sufferer I would certainly suggest that the benefits of taking the medication outweigh some of the side-effects. And try not to beat yourself up too much about stopping breastfeeding, your son needs you to be a fit and healthy mum more than he needs breast milk. You've managed four months which is a fantastic start for him. You now need to put yourself and your health first.

Feel free to pm me if you have any questions or just want a moan Flowers

Original poster
Changednamesorry · 15/05/2017 20:22

Thank you. I'm not sure what I will be given yet but apparently it's a classic case do I guess the most standard treatment. Apparently I will be seem at the hospital and have scans etc. Within 15 days at the latest apparently. I'm nervous but just hoping against hope that the result of this is a big reduction in pain and a better quality of life.

OP posts:
SnipSnipMrBurgess · 15/05/2017 20:31

I have RA and systemic arthritis since I was 4. I'm 36 now. I've had 2 kids and got through life and do all the things people without arthritis do. But it will be a case of getting your medication balanced, and then learning how to manage your arthritis. Losing a bit of weight will help- every additional pound of weight is equivalent to about 4 pounds in terms of pressure. I had to learn to be adaptive when it came to the kids.

're is usually in flare cycles and there will be times again when you feel ok . If you have any questions ask us. And we now have an auto immune board in the health section!

SnipSnipMrBurgess · 15/05/2017 20:32

I take roactemra injections once a week btw. Changed my life.

SnipSnipMrBurgess · 15/05/2017 20:35

@Alaskan
My RA disappeared in the second trimester for DS1 and flared back immediately after the birth.

I didn't go into remission for DD2 at all and just managed to get through the pain as best i could.

Original poster
Changednamesorry · 15/05/2017 20:57

Thanks so much for sharing stories here.....I feel reassured when I hear positive experiences. I'm just super nervous about it all and I guess I'm kind of in the I can't believe this is happening to me stage.

OP posts:
Original poster
Changednamesorry · 15/05/2017 22:46

Just spoke to my partner who is in Japan working on his parents ' farm for sale week before bringing them here to meet the baby and he has been amazing....really positive about the good side of bottle feeding and kind and supportive. I kind of wish he was here but I am am a bit pleased he isn't so I have the space to be strong and accepting when he is back and be over the bit at the beginning feeling sorry for myself stage so I can be ready to face it head on get on the medicine and get back to being a decent partner and mother instead of being all ouchy.

OP posts:
Fintress · 16/05/2017 10:03

It's great you have a supportive partner. It's frightening when your given a diagnosis, your mind works overtime. I was given a lot of leaflets to read. They made me so depressed I binned them. I remember lying in hospital feeling as if my world had ended, watching the nursing staff take my baby for a walk in her pram (they let me have her in with me which was amazing) when a girl was admitted for a routine check. She was gorgeous, all tanned and looked amazingly healthy. She came and spoke to me and said she had been me a few years previously. It was her that gave me the hope I was looking for, I vowed I would be like her. She told me that although it's very hard, a positive attitude helps. I just couldn't see past the next minute and thought the pain would never go away. The following summer I was tanned and healthy, chasing after my boisterous baby girl on a beach in Sicily.

I have no history of RA in the family and was told by my consultant that it's not entirely uncommon for a woman to develop it within a year of childbirth.

Hopefully you don't have to wait too long for your scans changed Flowers

Doodlebug5 · 16/05/2017 12:41

If you do go on to methotrexate give yourself a break for a few weeks. I take mine on a Friday night and struggle Saturday. The first six weeks were awful but it gets better. I've been on it 2 years now. One thing I will also say alcohol be careful. The liver copes with methotrexate but if you introduce alcohol it may cause issues. So be very careful especially in the first six weeks.

Oh and you will need a tap in your veins in your arms... 2 weekly blood tests to begin with...

Tiredflower · 16/05/2017 13:51

Hi my Ra went away in both pregnancies I stopped my medications almost straight away. I was taking Sulphasalazine which is safe in pregnancy and breastfeeding. Also the steroids prednisolone are okay too, although not a long term solution. When my Ra started again I went back on the steroids first by infusion and then both injected into the worst joints and orally. This got my through until the Sulphasalazine kicked in again. The morning stiffness is a part of the RA, steroids would certainly help with that.

I was always scared of starting methotrexate and have not taken it so far. My 2 year old was diagnosed last year with Juvenile arthritis and she is on methotrexate which I inject for her weekly. She is now doing really well so my opinion of the drug has changed greatly x

freshmilktoday · 16/05/2017 14:20

Do the consultants recommend you don't drink (or to excess) with RA regardless of which drugs you are taking or doesn't it make any difference?

happymonkey13 · 16/05/2017 15:21

Hi,
I have psoriatic arthritis and was diagnosed 3 years ago, just after getting pregnant with second child. I was on sulphasalazine when pregnant which didn't do much for me, as I throw up so much when pregnant that I could never keep enough down to be effective! But I was also given steriod injections every 3/4 months which were wonderful. My rheumatologist wanted to start me on methotrexate immediately after having my baby, but I wanted to breastfeed! We compromised on breastfeeding for 5 months and then starting medication. I was quite sad at the time as I'd breastfed my older child until she was two, but now I'm glad that I did it as it took me a long time to find the right balance of medication. Methotrexate takes about 3 months before you actually feel any difference, and after steadily increasing my dose every few months, and there being very little difference, after a year my rheumatologist then added cimzia ( a biologic) to it and the difference was immediate! I am now in no pain and joints are all the same size, though some fingers will never bend again! But it is wonderful feeling normal again and not dealing with pain every day.

I was terrified of the drugs after reading about all the side effects, but it's not been too bad. The methotrexate wipes me out for about 12 hours after taking it, but this is getting slightly better. Folic acid is the key to methotrexate! I take 5mg every day except my methotrexate day. And the only issue I've had with the Cimzia is the trauma of having to inject it! And actually, I just make my husband do it for me!

Good luck with everything! Xx

Tiredflower · 16/05/2017 23:31

I don't know about methotrexate for but the drugs I have taken nobody has told me not to drink.