Newly Diaganosed.

bluejay6497

Hi I have been newly diagnosed with Rheumatoid Arthritis. I have an appointment to see a Rheumatologist on Monday the 11th December.This will be my first visit. The Rheumatism is affecting both shoulders, both hands and wrists, both knees and my right foot. All this literally came on over night. I always thought that it was a gradual progression. I am in a colossal amount of pain to the extent i feel I cannot go on sometimes I have been like this for 8 weeks. The problem that I am having is about the medications that are used for this condition. I am already on several for other ailments like Diabetes, Underactive thyroid, blood pressure ect. My body is not very good with accepting medications , if there are side effects to be had then I will surely get them. I have been reading about the side effects of rheumatic drugs and It scares the life out of me. There is some serious side effects and I just don't know what to do I feel like I am between a rock and a hard place.

bluejay6497

webmanager wrote:

Hi bluejay6497
firstly I would just like to welcome you to the forum, you will meet lots of people on here who understand your concerns and also some who, like you were extremely concerned about the side effects of the drugs. There is no getting away from the fact that all drugs carry side effects and some of the most commonly used drugs for arthritis sound frightening.

The most important thing is to be very honest with your rheumatologist so that they understand that you are very concerned. It is best to find a treatment that you are willing to take so that you can start to get your arthritis under control as soon as possible so that your quality of life starts to improve. Ensure you have a contact number to phone should you be concerned about any side effects that do arise so that you can be assured of whether to continue taking it or not. Most rheumatology departments have a number you can call for this.

Having said all this most people take their medication with none or very minor side effects so whilst it is important to be prepared for your own peace of mind you may well find that everything runs smoothly. Lots of people with arthritis also have other conditions which does mean they end up with quite a few tablets to take every day, the combination keeps them well and able to get on with life.

With the sudden on set of your arthritis you are bound to feel overwhelmed at present so be gentle with yourself and rest assured that the very positive thing is that you will be monitored carefully with blood tests during the early months of your treatment and that things will get better for you.

Come and chat here to others, there is no such thing as a silly question or concern, the members here are very supportive and will be with you during these early times. Let us know how your appointment goes
Best Wishes
Sharon

Thank you Sharon for your kind words of support. Like you say it is very overwhelming at the beginning and not knowing who to turn to. I can only hope at this stage that I will have very few or better still no side effects. I will definitely let you know when I have seen the Rheumatologist and what he has to say.

dibdab

Hi there, welcome aboard....really sorry that you had to find us. First let me say that this is a really good place to come with your fears and anxieties, the folks here are wonderfully supportive and ready to listen whilst we unload.

I also have rheumatoid arthritis, for around 12 or so years but I probably had it for a while before diagnosis. Like you I take meds for several other ailments so I would say don't panic. There are all kinds of meds out there for RA, and if one doesn't suit you they have lots of options to try, for me the key is to be very honest with the rheumatology team and trust their experience to help you.

Gaining yet another medical problem can feel very overwhelming and isolating and it's important to talk those fears and anxieties through, also I think when others share their experiences you begin to feel less alone and see that there is still much that can be enjoyed and achieved, it's a matter of tweeking what we do and how we do it. Once the right combinations of meds are found your pain will be much better controlled and you'll find your own ways of doing things. For me a key thing is to rest well as fatigue is a major part of the RA. There is lots of information available to help you understand this disease better, and to share with family/friends/employers etc.

I hope your initial rheumatology appointment goes well, it's helpful to take along someone to listen with you in case you don't catch everything the doctor says, and I always take along a list of what's been happening physically and also any questions I want to ask. It will help the rheumatologist if you can take your repeat prescription with you so they know what meds you already take.

Let us know how you get on next week.

Deb x

bluejay6497

dibdab wrote:

Hi there, welcome aboard....really sorry that you had to find us. First let me say that this is a really good place to come with your fears and anxieties, the folks here are wonderfully supportive and ready to listen whilst we unload.

I also have rheumatoid arthritis, for around 12 or so years but I probably had it for a while before diagnosis. Like you I take meds for several other ailments so I would say don't panic. There are all kinds of meds out there for RA, and if one doesn't suit you they have lots of options to try, for me the key is to be very honest with the rheumatology team and trust their experience to help you.

Gaining yet another medical problem can feel very overwhelming and isolating and it's important to talk those fears and anxieties through, also I think when others share their experiences you begin to feel less alone and see that there is still much that can be enjoyed and achieved, it's a matter of tweeking what we do and how we do it. Once the right combinations of meds are found your pain will be much better controlled and you'll find your own ways of doing things. For me a key thing is to rest well as fatigue is a major part of the RA. There is lots of information available to help you understand this disease better, and to share with family/friends/employers etc.

I hope your initial rheumatology appointment goes well, it's helpful to take along someone to listen with you in case you don't catch everything the doctor says, and I always take along a list of what's been happening physically and also any questions I want to ask. It will help the rheumatologist if you can take your repeat prescription with you so they know what meds you already take.

Let us know how you get on next week.

Deb x

Hi Thank you so much Deb for your welcome and your kind words of support it really helps. It really is a frightening place to be at first. As I am sure you know only to well yourself the pain can be overwhelming. I will be letting you know how things go on Monday with the Rheumatologist. I want to thank you once again for answering me Deb at the moment I am feeling a bit sorry for myself and teary. I to hope things go well on Monday. x

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I have another kind of auto-immune arthritis which was a slow-burner but I am aware that for an unlucky few RA can hit suddenly and hard.

I've been on medication since I was 12 and have not had much bother with side effects (admittedly I always blithely assume I won't have any). My arthritis began back in 1997 but I didn't begin any meds until 2002. I had a brief hiccup with one med back in 2006 but felt perfectly well. I am currently on methotrexate and humira and have no trouble with either (apart from feeling a little more tired every now and again after I've taken them). When the meds are begun we are very closely monitored with regular blood tests, hopefully your rheumatology unit will have a Helpline you can ring (with mine you leave your details with a brief message and someone calls back) and hopefully your GP will also have some understanding of the meds etc.

For your first appointment it is worth making a note of what areas are affected, pain and tiredness levels, whether morning stiffness eases and by when so that the rheumatologist gains a better all-round picture of you and how you are being affected. I do not know how the diabetes will impact (are you type 1 or 2?) on the treatment he can offer but he may want further tests before he prescribes any medication. Are you able to take someone along with you to be an extra pair of ears?

I wish you well and please let us know how you get on. DD

bluejay6497

Thank you DD It is such a comfort to have found this forum. I really must start to think positive about this diagnosis but that is really difficult as my mood is so low at the moment and my pain is extreme. I will do as you suggest and make a list of pain areas, meds that I am already on.ect. Hopefully on Monday after my appointment I will feel a bit more positive and hopeful.

dreamdaisy

Why should you start to thing more positively? You have had a dreadful shock, you need time to absorb this awful news and then you will deal with it in a way that suits you. I remember my plunge into depression in 2011 when my OA was diagnosed: I naively thought that one could have either OA or an auto-immune, I didn't know that both was an option: I do now. DD

trepolpen

trying to think back when I was first told about Rheumatiod Arthitis , was along time ago , mid 90s the so had it over twenty years

the drugs are not that bad , I started one of the new biologics a few months ago & getting on with it fine & was on methotrexate for 18 years , & things have changed alot since I first developed RA & new drug are being developed all the time , so there is hope they will find a good treatment at some point so stay positive

bluejay6497

Thank you Trepolpen It is very reassuring to hear that the meds are not that bad this is my greatest fear at the moment. I am just hoping that I will get one that suits without many side effects. I have had a really bad night ended up sitting in the chair all night to much pain everywhere to be able to lay down. I have severe pain all the time but is it normal for that pain to get really really bad where it lasts a few hours then subsides again. ? It feels like I am having a flair up on top of a flair up. I'm so distressd at the moment and don't know what to do to help myself.

barbara12

Hi bluejay6497
Sorry I cant offer much advice, but just want to say welcome to the forum, if you do a search at the top of the forum you will get more info, like you say it helps to talk to people that understand some of that you are going through..

dreamdaisy

Pain is the body's alarm, it tells us that something is wrong which needs to be fixed and when it is, it goes. My alarm started ringing in one joint back in 1997 and is still merrily ringing away in many more but for you this is a very new experience and it will seem proportionately worse because it's all so new, so different, so unnatural, so appalling. Pain demands attention - learning not to pay any is very difficult.

The quicker the diagnosis, and the sooner one begins the meds, the better the outcome can be. One of the benefits of bringing the disease under control is that pain levels can be reduced, and for many that is a reality. What pain relief are you taking? DD

bluejay6497

Thank you Barbara and DD I am only on painkillers at the moment. Ibuprofen and paracetamol. I have an appointment on Monday with the Rheuamatologist which will be my first visit.

trepolpen

you will need one of the DRAMD drug to help control the RA , Methotrexate was the main drug they used but dont know what they will give you , folic acid will help with the side effects & if you read up about the drug remember its a drug used to treat cancer at a lot higher level so you wont get hair loss but they will tell you about the drug they use so sont worry

as dreamdaisy said , think of pain as your freind & telling you when you need to rest but it will get better & they will get it under control , & they can quick track you onto the biologic drugs used to treat RA

bluejay6497

I'm devastated.

dreamdaisy

Hello, that doesn't sound good: has the rheumatologist confirmed you have RA? DD

[Deleted User]

Bluejay6497

You don't say what happened at your rheumatology appointment yesterday, but clearly you are very, very upset.

Please do telephone our helpline on:

0808 800 4050

If you feel you want to it might help you to talk things through with one of the helpline staff.

Wishing you the very best.

Ellen

bluejay6497

Thank you ladies. My rheumatologist said my BT results where extremely high and that my condition is classed as severe. I will be starting on Methotrexate on Saturday night and will be injecting. They gave me a steroid injection at the clinic in my thigh muscle to help relieve the inflammation and pain. Is there any thing else you could suggest that will help me get through this initial process. I am truly afraid of starting this drug but am between the devil and the deep. Dammed if i do dammed if i don't.

Inflexible

bluejay6497 wrote:

Thank you ladies. My rheumatologist said my BT results where extremely high and that my condition is classed as severe. I will be starting on Methotrexate on Saturday night and will be injecting. They gave me a steroid injection at the clinic in my thigh muscle to help relieve the inflammation and pain. Is there any thing else you could suggest that will help me get through this initial process. I am truly afraid of starting this drug but am between the devil and the deep. Dammed if i do dammed if i don't.

BJ, has the injection in your leg helped? A lot of what you say has a familiar ring to me and I'm wondering precisely what the diagnosis is for you. With regard to your blood test being "extremely high", was it explained precisely which blood component? I suspect it will be your C-reactive Protein level (CRP), this is a marker for inflammation and would be elevated given the situation you've described. I think normal is considered under 5, but mine was up at 45 when arthritis first hit me.

I'm thinking the shot in your leg will most likely be depo-medrol, it's a methylated form of a very common steroid (Prednisolone). I wonder if you need a bit more help than that initially? I was told by the rheumy nurse that the depo injection (which lasts for 2 - 3 months) is about the same as 5mg of oral prednisolone per day. I was prescribed 30mg orally to get things under control and that helped overnight .... it's not to be taken lightly though, the side effects are severe and I've spent the past four months reducing my dosage and I've been off it for about a week now. There are people here who are much more knowledgeable than me, but I'm thinking you might need a bridge to get you to when the methotrexate begins to work.

Just a thought - did your blood test reveal the markers for RA?

bluejay6497

I forgot to ask for a print out of my results but the Rheumatologist said that one result was 340 and the other 295 when they should have been about 7 and 15. I have to go back to clinic this week so i will get them to print it for me. It is all a bit confusing at the moment and a lot to take in. My initial appointment was on the 21st of this month but they called to say i needed to go to clinic asap so it was forwarded to yesterday.

dreamdaisy

Crikey, no wonder you are feeling as you are. To my way of thinking those figures refer to your inflammatory levels (which are most likely to be CRP and ESR). Those figures are very high hence the urgency with the meth. I cannot recall what I (or others) have said before so if I am repeating anything I apologise.

Meth is one of the DMARDs (disease modifying anti-rheumatic drugs) and it works by suppressing the immune system. This is necessary because it is the source of your very active RA. What triggers the immune system to do this kind of thing is unknown, my immune system has been over-active since birth so no surprise there but other triggers include pregnancy, illness or it could result from other conditions or their treatment. Auto-immune conditions tend to run in families but they can also start from nowhere; having other ongoing health issues is no guarantee against further trouble either.

I have had a number of steroid injections (sub-cut and directly into joints) and never had much success with them for my psoriatic arthritis (PsA, another auto-immune kind). Sometimes they work, sometimes they don't but they are not a long-term treatment. If they work they can make you feel better but they are not tackling the root cause of the arthritis. By reducing your immune system the meth will slow disease activity so your figures should reduce over the next few weeks - I suspect you will be having very regular blood tests for a little while. If they do not reduce as fast as would be liked then another medication may be added: this is all dependent on how they impact on your other health concerns.

I inject meth weekly and have absolutely no trouble with it apart from very occasionally feeling extra tired for a day or two. I don't know if you are injecting insulin or whether injecting will be a new thing. I know that both my meds are controlling my condition very well because my bloods are lovely, sometimes my CRP and ESR are too small to measure but, if they are raised, it's usually due to a bruise or two.

The reduction in our immune system leaves us more open to infection so, if you have not yet had a flu jab, I recommend contacting your GP to arrange one. Increase your hand hygeine and encourage others on your family to do the same. Guests to mine are offered hand gel on arrival and they also know to check whether they should come round if they are (or have been) poorly.

Please ask any questions you may have, we will do our best to help. I am in my 21st year of this malarkey, have tried quite a few of the meds so have quite a bit of experience: I am not, however, a doc.

Take heart. You are not alone, it is without doubt a huge shock but many of us have been there and come through: so will you. DD

bluejay6497

Thank you DD for your support it is helping immensely. I am going to try to get a print off my results this week (I can't believe i forgot them) but yes my results was that high but I don't remember which number was for which test. There was so much flying at me in the clinic i forgot half of it. The steroid injection i had in my thigh as helped the pain slightly but i am told it can take days to work. Before i had that i wanted to die literally the pain was to much for me to cope with. I am so grateful someone took another look at my results and sent for me to attend the clinic immediately.

dreamdaisy

You're more than welcome, I hope that I am not overwhelming you with info but at least you can read back through the posts. I can easily believe you forgot to ask for copies of the results - in the early days one can be bombarded with information at appointments, it's a bewildering time for you and a run-of-the-rheumatic-mill for them. The staff are very familiar with all the terms and jargon and genuinely forget that not everyone can speak rheumatology.

I am very tired, today has been both a busy and cold one so I will toddle off, it's definitely bed time. I'll be back tomorrow morning - if you have any questions or would like some further clarification about things then make a list and I will do my best to answer. DD

trepolpen

hi bluejay6497 , the results could be rheumatiod factor which would show you have RA , the other blood test CRP & ESR shows inflammation & would be worth knowing what these levels are ,

mine when I first started was 450 but it means little other than they need to fast track you & get your RA under control , they will get it under control , methotrexate is a very good drug & folic acid is what we use to help stop the side effects from it

dreamdaisy

Hello, how are you feeling today? Re. side effects, I understand that it is not an easy thing to do but please try to bear in mind that potential side effects have to be listed by law (and can make for scary reading) but are not guaranteed: yes, some can tolerate the meds better than others but things can (and very often do) settle down if one sticks with the plan. The folic acid we can take if necessary is prescribed because it is a stronger dose than can be bought over-the-counter (OTC). It is a supplement, not a medication, and will not cause any harm if taken as prescribed. I'm written up for it but never take it because I don't need it, my meth dose is 15ml and causes me no physical upset whatsoever.

There is a lot to become familiar with, isn't there? I tend to forget how complicated it can seem for someone new to it all, I've been juggling inhalers, injections and pills for the majority of my life and don't think twice about any of it: my take on it is that life's too short for twisted knickers. I listen to the docs, listen to my body and get on with it which now means going off to inhale, swallow then take a trip to Sainsbury's: deep joy. See you later. DD

bluejay6497

Hi DD so glad to hear from you today. I haven't started the MTX yet I am waiting for the clinic to get back to me with my x ray results on my chest to see if it will be safe for me to take.. Then I have to have someone to show me how to do the injection. I am hoping it will be sorted by Friday because i want to take my first shot on Saturday when my husband is here. I don't want to be on my own for the first one, does that make sense. My pain is a little easier today so the steroid injection i had Monday may at last be starting to work. But saying that I got stuck on the sofa this morning and couldn't get up. Going to look for an easier chair at the weekend that's a bit higher so it will be easier. x

dreamdaisy

Hello, I have returned from my wanderings, my husband took me to a lovely shop with café attached which meant I could leave him with tea and a paper whilst I spent far too much money on pretty things (the money is my own so he can't complain).

Right, the injection: the following is designed to give you some general information so you have an idea about what will be discussed on Friday. It is a very straightforward process but I remember my trepidation with my first experiences of both syringes and pens. I think the pens are now standard for meth and the usual injection sites are the upper thigh and / or the stomach: I stick to the thigh as I have another injection to do (which is much bigger so I prefer the stomach for that) and I alternate between the left and right sides. My hospital advised that it was better to sit on the bed with my legs out in front of me as this relaxes the muscles, as opposed to doing it sitting or standing. My meth is supplied by a company called Healthcare at Home who deliver once every eight weeks, they also supply and take away sharps bins. The meth sharps has a purple lid and great care must be taken with it because tjhe contents are not that lovely. Never, ever fully seal the bin until it is full because once it's shut it cannot be opened!

Right, I'm off to play with my lovely new Christmas tree decorations which included a beautiful rose-pink glass Santa. DD

christmas05